Relying on Others

As you know, Liv has nurses that watch her every night.  Tomorrow is New Year's Eve and I was supposed to go watch my husband play at a restaurant.  The only reason he took this gig was because I could go and we could be together.  Well her nurse called out.  She's going out of state to be with family.  I really try to have relationships with the nurses.  There has to be trust and a bond in order to help Liv.  I just don't understand why she couldn't have talked to me about it and we could have made arrangements or Drew would have not agreed to play.  But since she waited until today, only a nurse that has never been here before can come.  This means I can't go out because they don't know Liv and she doesn't know them.  Imagine waking to a stranger and your parents are anywhere in sight.  She already gets stressed when I just go to the bathroom or get a drink.  So we told the company that we didn't want her as a nurse anymore.  She called me to talk it through but I can't rely on her now.  I mean it's not like she just found out about the trip today.  She could have talked to me last Saturday or something.  I hate dismissing a nurse that we've had for 6 months, but I lost trust.  So my NYE is me, a nurse I never met and Liv sleeping. 

Getting Closer

Last night Liv was standing for a minute, several times.  She even took about 7 steps without falling.  She was so proud of herself.  She was clapping and squealing.  She didn't even have her braces on.  It's so exciting to see progress. 

She also started putting fake phones up to her ear and saying hello.  She pulled herself to a stand at her kitchen yesterday.  She's been blowing kissing and trying to do real kisses on my cheek.  She's been more vocal.  She really wants to talk.  She's looking like such a big girl all of the sudden.  I wonder if it's due to the big girl bed. LOL

Vacationing with a Special Needs Toddler

This week we went to the Poconos for a mini-vacation.  We were hoping to be there for 4 days and ended up leaving early.  I was hoping for snow to let Livy play in it, but no such luck.  We had rain instead.  The first night I went to the outlets and got to leave Liv behind.  The next day we went to an indoor water park that was crowded, of course it was due to the rain.  When you go to a place like that with a child that can't walk, it can get frustrating.  The kids just run through the water and splash her, which she doesn't like.  She didn't mind the wave pool.  That's where we spent most of the time.  I can only take the water for so long.  It would be one thing if Liv could go down some slides or sit in the water herself, but she can't.  It's like having an infant at a water park.  Water parks used to be my favorite thing, but I have lost interest.  Then we went to dinner and Liv wanted to throw all of her toys on the floor repeatedly.  I got fed up.  I can only pick up the darn things so many times.  It's not like this is different than any other time we go out to eat, but I envision vacation as having a chance to breath.  I was so fed up that we decided to cut the trip short and just go home.  I felt better when we got home and everything was familiar.  I'm hoping that someday vacationing will be easier.  We are supposed to go to Martha's Vineyard this summer with family, but I'm not sure if I can do it.  It will be 7 hours away, which means cutting the trip short will be harder.  Plus we never been in the car longer than 3 hours with her.  It's stressing me out and we aren't even close to going yet.  Maybe I'll just have to pass.

Big Girl Bed Night 2

Last night was awful.  Liv fell asleep in the car an hour early.  She woke up at 10:30 and wouldn't go back to sleep.  I spent a lot of the night laying in her bed trying to get her to sleep.  She woke up at 5:30 am so I crawled back into her bed and she slept off and on until 7:30.  I'm hoping for a better night tonight.  We have a big day tomorrow and I need my energy. 

Big Girl Bed Night 1

We put together Liv's new bed last night.  She looks so tiny in a big bed.  Her doctor said she needs to go to sleep without us holding her and that might help her sleep through the night.  So we figured we would put together a twin bed and do the new routine with a new bed.  The nurse said she woke up twice but just to look for her binky.  My husband is worried that she is going to fall off.  Of course it's against the wall and we have a bed rail on the other side, but there's still a gap.  Everything was fine last night so I guess we will just continue to see how she does.  She doesn't understand that if she leans off of the bed or couch, that she will fall off.  I hope she continues to do well with it.

Self Feeding

Livy was doing it again yesterday.  She was feeding herself Cheerios.  She hasn't be able to do this before because of their size.  She still rakes and has trouble getting them in, but she was doing it.  This is so exciting.  She's not ready to do it all the time though.  I tried it with a french fry for dinner last night and she just wanted me to do it.  I guess we have to start somewhere and we will get to full self-feeding one day.  She does not like to touch soft and slimy things, so that will be awhile before she self-feeds fruits and some vegetables.  At least we are on the right path!

Developmental Appointment

Today we went to the Developmental Pediatrician for the first time.  It was a long appointment and we didn't get as many answers as we were hoping for.  I guess we didn't really get much at all.  She has to go back every 6 months, so now that's another doctor to add to the list.  She told us that Liv is about an 8-10 month old developomentally all around.  Kinda hard to take when she will be 3 next month.  She has a full write up that she will mail to us and it will have her IQ score on it.  She was also concerned about the way Liv walks, so she gave us a recommendation to have that progress looked at, which means another doctor.  I guess I'll call tomorrow and book that appointment.  Liv just had no interest in the toys that were presented to her.  It gets frustrating when you know she can do something but won't for others to see.  Oh well.  Everyone there loved her because charm was on full blast as usual.  She gave us some tips for getting her to sleep through the night, but I guess if she's not mentally considered to be 1, she might not sleep through the night until she is.  We will get her big girl bed set up this week and I'm hoping that will help.  I guess sometimes we hope someone can look into the future for us, but that's never going to happen.  Again we were told that they have never seen the combination of the two disorders together which makes it even harder to tell what the future holds.  As long as she stays the snuggly, sweet girl that she is, she will be just fine.

Visitors from Across the World

Liv's Aunt Polly and Uncle Tony are coming to visit from Africa.  They haven't seen Livy for 2 years.  I can't wait for them to see her.  They have been keeping up with her by reading the blog and looking at pictures through Shutterfly.  They will be at our house on Saturday, which is great because she really acts herself when she is here.  They will also get to see her on Christmas.  She's going to be great this year because she's really into ripping paper and toys.  This will seem like the first time she is understanding what's going on.  It's great they will get to see her reactions to presents.  Can't wait to see you guys!

Endocrinology Appointment

Today Liv had her appointment.  They said her growth is normal for a girl her age, however she is only in the 1 percentile.  She is on the 50% for the Turner's chart.  That's great!  They said she probably won't need growth hormones until 5.  At least that's one less worry for now.  We did get scripts to check her thyroid levels.  She has to get her Topamax level read from Neurology, so we will get them done next week at the same time.  They are happy with how well she is doing.  She isn't really showing signs of Turner's.  No heart problems, no kidney problems, no webbed neck.  I'm hoping for good test results!

Neurology Appointment

The appointment went well today.  She hasn't had seizures since her last appointment, so they didn't change the meds.  We thought she might have to have an EEG, but since she is doing well, we got to skip it today.  We go everything 3 weeks and they were surprised to see how much she is doing.  When we went in August, Liv only had her walker for a month so we didn't take it out with us yet.  Now she walks around the hospital until she is too exhausted.  Of course she makes everyone look at her and tell her how cute she is.  Yay for a good appointment.  Next one is in 3 months.

Endocrinology appointment tomorrow with updates following.

Home Sick

Liv had a fever last night and still had one this morning.  It was obvious that I was going to keep her home today.  She was fussy and kept calling for daddy while he was getting ready.  (yes I'm jealous that she can say daddy and not mommy)  I brought her downstairs and put on Mickey Mouse to have her relax.  She saw Drew put on his coat so she grabbed a toy and wanted him to pick her up.  That's what she does when she leaves for daycare.  She thought she was going to school today.  It was so sad.  She was so upset and cried for about 15 minutes after he left.  It's amazing that she thinks she should go to daycare even though she feels like crap.  Her determination is the most beautiful thing to witness.  She has more strength than I will ever know.

So Funny I Almost Peed

My daughter was sitting with me on the couch eating popcorn.  I was breaking it up and feeding it to her.  She kept reaching into the bag so I figured how bad could it be if I let her feed herself.  She did it!  She picked it up and put it in her mouth all by herself.  She did it over and over.  It was so exciting that my eyes teared up.  Liv is almost 3 and we have had to feed her everything as if she is 8 months old.  This is a huge milestone for her.  While I'm marveling in this amazement of my child, she decided to pick up the bag and put it on her head, and yes the popcorn was still in it.

Stationery card

Starlight Snowflakes Christmas Card

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Posted from a Tweet of a Parent with a Special Needs Child

To Whom it May Concern,

I am the parent of a special needs child.  I was overwhelmed, confused, heart broken and struggling to unravel the complexities before me.

Please do not pass judgement of me without knowing why I did not attend the school PTA breakfasts or community picnics.  Please take a few minutes to understand why I did not take you up on your offer to have lunch or grab a cup of coffee.  Although we see each other in the supermarket or at school functions, I don’t think you really ever knew me, actually, I can guarantee that you did not know me because just as my child was different, so was I.

I was in survival mode to keep my family in tact and to give my child the best quality of life possible.

I was presented with parental decisions that have torn me apart and kept me up more nights than I can possibly remember.

I had spent most days of the week at therapy and doctors appointments and most nights up researching treatments and medication options.

I was forced into isolation at times due to the stigma and misconceptions that are epidemic in our society.

I became proficient at prioritizing my life and learning to let the little things go, to look at others with compassion instead of tabloid material and to turn a blind eye to the stares or ignorant comments.

I did the best I could.

I survived.

I am one of the lucky ones, my child has blossomed and has exceeded all our expectations.

I have now become strong, I have become confident and I have become a fierce advocate for parents of special needs children.  The growth did not come without much pain and many tears but it came.
So I ask you, please


The next time you see a parent struggling with a raging child, a child terrified to go into school, a child making odd movements or sounds, a child that seems to be in a world of their own… .Be kind.  Give a smile of recognition for what that parent is going through.  Ask if there is anything you can do to help, give them a pat on the hand or offer for them to go ahead of you on line.

The next time you have a birthday party for your child remember that their child has a hard time with a lot of sensory issues and social situations.  Please send their child that invitation and know that more times than not they will not be able to attend but appreciate being included.  Understand that in order for their child to go to the party they may need to stay for a little while and please make them feel welcome.  When they let you know that their child cannot make the party consider inviting that child for a one on one playdate or an outing at the park.

The next time you are grading homework papers please understand that their child struggles, some with learning disabilities others with the exhaustion of  their disorders or the obsession with perfectionism.  The Perfectionism is not necessarily to have the answers right but to have it “feel” right for them.  They have spent hours doing what most can do in ten minutes. A paper returned with red circles and comments only hurts a child’s self esteem and causes school anxiety. Please understand that when they see the school come up on their caller ID their hearts sink, remember to tell them about all the gains their children are making as well as their deficits.  Take a minute before that call and know that they appreciate all you do and want  a collaborative  relationship in their child’s education.

The next time you are in the teachers lounge, please do not discuss their child.  Please do not make negative comments about their parenting or their child’s behavior, it gets back to them and it gets back to other parents in their community.

The next time you pass the cafeteria and see their child sitting alone please consider inviting that child to eat lunch in your classroom and be your helper that period.  Consider working with a guidance counselor to set up a lunch buddy group in a different area.

The next time they are at the CSE meeting planning their chid’s IEP know that they are educated, informed and confident knowing special education law.  Know that they have found the courage to stand up to conformity and will explore every option to give their child the differentiated educated that will show their gifts and not just their disabilities.  Understand that educating a child with special needs is one of the most difficult tasks a parent can face,  know that the last thing they want is an adversarial relationship.  Please show them the same respect they show you.

The next time you are creating an educational plan please take into consideration that their child may have specific interests or obsessions.  Foster those interests, instead of taking away that art class for a resource class consider adding an art class instead. Think outside the box, these parents do.
The next time you see that child in a wheelchair unable to speak or control their movements, don’t stare, don’t look away, say hello.  Do not assume that because this child is nonverbal that they are not intelligent or do not understand the awkwardness that you feel.  Take a moment out of your day to show kindness, support a parent enduring incredible pain and just give them a smile.

The next time your child comes home telling you how Johnny or Susie is so weird, take the time to teach about differences.  Take the time to talk  about compassion, acceptance and special needs. Please remember that your child learns from you.  Be a role model, mirror respect and discourage gossip.

The next time you hear a comment about how out of style these kids are, educate about tactile sensitivities and the fact that these kids cannot tolerate many textures and fits.  Imagine what it would feel like to have sandpaper in your stilettos or tight elastic holding on your tie.

The next time you see an out of control child do not assume it is bad parenting.  Understand that many of these disorders have an organic basis, are biological and are real illnesses. When you hear the words mental illness, take out the “mental” and remember  ”illness”.

Know that it is this generation that can stomp the stigma and create a world of acceptance.

The next time other parents are talking about “Those Kids” be our heroes, stand up for us.

The next time you see a special needs child know they are not just special in their needs but in their brilliance as well.

Take the time to meet our children.  Take the time to know us.

By: Marianne Russo

Christmas Decorations

Livy is learning what "no" means.  It's taking her a long time to understand the concept and at times, she chooses not to listen.  I'm worried about putting up a Christmas Tree.  I can see it now, she will walk up to it with her walker and yank it down.  I can't imagine seeing a tree crushing my daughter.  I didn't decorate at all last year due to this fear, but I felt like it wasn't Christmas.  It's tradition to decorate.  I think I will wait until next weekend to put it all up so there's less time that it's up.  I guess my patience will be tested in the next month.

Getting Ahead of Myself

Today I told the principal that I needed off on Monday because Livy has an appointment.  I'm a week ahead of myself.  So now I have to wait and see if I can go into work on Monday because she may already have a sub in my place.  She hasn't had as many appointments as she used to and I guess now there's too much time in between for me to know what's going on.  It's a great thing!  Most of her appointments have slowed down a lot.  Some doctors we had to visit once a month and now it's once a year.  She definitely doesn't get as sick anymore either.  Well I might be able to work on Monday, but if not, it will be a nice day off.

Preschool Part 2

I called yesterday to make sure all of Olivia's paperwork was completed and to see if she was set up for school.  I had her caseworker call to reserve her a spot and of course I had the paperwork done in a week (including the papers from the doctor).  She is all set and they gave me her schedule.  She will go on Tues, Thurs, and Fridays.  I'm so excited that my child will be in a learning environment.  Being a teacher, I wanted her to be in a daycare that would do the same.  The problem was that her epilepsy was out of control and she couldn't stay at the daycare she was in.  She needed to be in a medical daycare.  I love it, but there's a lack of learning.  She starts Feb 2.  I can't believe how fast she is growing up.  This school is perfect for her.  If it turns out not to be then we will search for the one that is.  But I really believe that it will be great for her.  I have to prepare myself for birthday parties and Halloween parades and art projects.  I hope she learns a lot from the other students.  I just know that she will love it!

Feeling Better

 It's great to be able to vent on here and get such comforting responses.  My blog is meant for me to release some stress but also inform the world about what it's like raising a special needs child.  This is something that I will look back on years from now and remember how I felt when I wrote a certain blog.I'm hoping down the road I'll look back at all the things I thought my daughter wasn't going to accomplish and notice that I was wrong.  Maybe she will be able to read this when she gets older.  I'm so blessed to have the friends that I do.  You support me when I write things that make me cry.  I don't mean to make you cry, but I just want people to understand.  I hope this also helps other know that they are not alone in the world.

I Fixed It

My blog always scrolled to the bottom first and I read up on why it was doing that and it was because of the calendar at the bottom of the page.  I'm sure none of you are going to miss that.  At least it loads right now!

Getting Over What She Can't Do - Part 2

Last night I laid in bed crying after the post I made yesterday.  I am really realizing how much I'm going to miss out on.  My daughter not being able to talk may not seem like a big deal, but I feel like I will miss out on so much that is going on in the little brain of hers.  I will never know what her favorite color or food is.  I will never talk about a boy she likes or how her first date went.  We will never discuss tv shows or movies.  She will never read to me.  She will never tell me that she loves me.  We will never discuss what she learned in school or at church.  She will never be able to tell me who her best friend is.  I wonder if the children she grew up with will leave her behind because they can't communicate with her.  It makes me cry and I hope that I can get through this stage quickly.  There's many stages of denial and when having a special needs child, you can go through them many times.  There's many times that I am strong and her delays don't even phase me, but realizing that she might not talk is definitely taking a toll on me.

Getting Over What She Can't Do

I feel like every time I turn around, I hear about someone's child learning something new.  I look at the children she grew up with and realize that they are light-years ahead of her.  I still feel like I have an infant.  I would like to have another child, but then I would have 2 babies.  I think the hardest is that she can't talk.  Everyone's children are learning so many new words every day and mine can't talk.  I wish she could show the world how smart she is.  When she was born I already was thinking about everything I can teach her before she gets into Kindergarten, but now I don't even know what to do.  We just take it one day at a time.  Everything that she learns is a blessing, but why can't she talk?  I feel like I could handle the slow learning better if she could talk to me.  I know that she is here to teach me things that I never imagined, but it gets hard.  Sometimes I just want her to be like everyone else.  Why can't she be?  Why can't she say mama?  Why can't she at least learn sign language.  I would love to communicate with my daughter.  I feel so helpless.  I would love to give this child everything, but it's not my job to construe God's will.  I know He will guide us through this, but it sure is frustrating.  God, grant me the strength to take care of the child you have sent me.  Give me the patience that I need when learning to understand her wants and needs.

Upcoming Appointments

Liv has two important doctor appointments coming up.  One is Endocrinology which we discuss her Turner's Syndrome and what our next step is going to be with dealing with it.  There's not too much to do now, but we discuss the future.  They want her to take growth hormones, but not yet.  Olivia is the youngest patient they have ever had.  Usually Turner's isn't discovered until a girl never gets her period.  The other appointment is with a Developmental Pediatrician.  We will finally get some answers as to what she will be capable of doing.  Maybe even find out if she is MR or going to talk.  We have waited almost a year for this appointment, so we are very anxious.  I am bracing myself for bad news.  We usually get bad news at stuff like this and I never prepare myself for it.  I guess that's why I've been a little depressed the pass couple of days.  I'm coming to terms with the fact that my daughter might never talk.  It's hard to deal with.  I've never heard my husband say it, and he did this week.  Hopefully she will prove us wrong!

Getting Over the Guilt

Over the weekend Livy fell asleep downstairs and I carried her to bed.  It was really dark in her room and I put her in her crib.  She has a lamp next to her crib that turns on by stepping on the switch.  I was looking for it but it was so dark.  In the meantime, Livy starts screaming. I assumed it was because she was confused about how she got into her crib and wanted out.  When I finally get the light on, I notice that her gtube is missing.  Of course I went into freak out mode.  Doctors said the hole can close up in 20 minutes.  Well that made me realize why she was screaming, it was completely pulled out because I place her on it and when she moved, it was pulled out from inside her stomach.  I find it in her crib and know that I have to put it in myself (hubby was gone).  I was trying to put it in and she was crying and I felt horrible.  I finally get it in and she crawls around like nothing happened.  I then realize that I was supposed to use lube to put it in and that's why I had trouble getting it in.  Since I was in panic mode, I didn't clean it either.  Well she is fine and it took me about 3 days to forgive myself for it.  At least I know what to do differently next time!

Learning Lots

Livy is learning a lot of things right now, but the downfall is that she only does it once or twice and then you don't see it happen again for awhile, if at all.  She has gotten into her walker herself, crawled, stood, gotten out of her walker, pulled herself to a stand, and taken a couple of steps.  This tends to happen and then she will go months without learning anything new.  It gets frustrating.  I was thinking she might be able to walk by her third birthday, but now I don't think so.  She's very wobbly.  I know she is working hard and I think that's great, but I wish she could do  more, or at least consistently do the things that she learns.  Well all I can do is keep on practicing with her.  At least it's fun!

Pre-School

We went to a pre-school today to see if we would like Livy to go there when she turns 3.  We really liked the place.  She would start in Feb.  She would go 3 times a week and spend the other 2 days at Lauren's House.  So she will still have her friends from daycare.  This is very exciting to know she will be in a learning atmosphere but it's also sad to realize my baby is growing up.  I hope that we like it this much when she actually starts going.  The one 3 year old class was doing yoga.  SO CUTE!

Frustration

My husband has a teenage daughter that has been acting up.  This causes my husband to get frustrated and spend his time thinking about it.  I have to spend time trying to make him feel better and time with Liv can be wasted.  Just because he's in the room with her, doesn't mean he's actually mentally there playing with her.  I hate the fact that she can do this to my family.  I wish there was a way that my husband would fester over this stuff for days.  I don't like how I have to remind him that he has a wife that loves him, as well as a daughter that adores him.  If only she could understand how her stupid decisions affect the whole family and not just what she is doing.

Her Last Quarterly Meeting

Today was Liv's last quarterly meeting.  When she turns 3 she will be with a different program.  I've gotten close to some of her therapist that it's going to be hard to say good-bye.  Hopefully we will stay in touch and they will get to see Livy.  They have taught her so many things and get just as much joy as we do when she learns something new.  They have taught me so many things about how to teach my daughter.  They will be missed!

IEP

This week I went to a meeting to set Liv's goals for her IEP.  She has about 7 goals.  This won't start until she is 3, but we got started early on planning for her.  Who knows, maybe she can meet a goal before she even starts the IEP.  She is moving around a lot more.  She even crawls a little bit now.  You can tell she's unsure of herself and feeling weak, but she puts her desire over that.  Her services will basically stay the same excepts speech is getting lowered to only an hour.  Since she doesn't talk, I think they will add more time.  I think I'm going to check into seeing how much it would cost to take a sign language class.  I know that she could only use basic right now, but it would be a good thing to know.  Plus then it could be our secret language.

She Did It

After Liv got home from day care, we were all hanging out in the living room.  I had this feeling like she could take a couple of steps on her own today, AND SHE DID!  She took 3 steps about 4 different times.  She also stood by herself for about a minute.  I guess all of that walking with the walker around day care is really paying off.  But it does make her so tired.  She took a nap at 5 today.  She's my little hard worker!

Love Bug

Olivia is the most social person I know.  She just adores cuddling.  It's so cute that she rolls over to her side and grabs me and pulls me into her chest to snuggle.  She loves to rest her head on my shoulder all of the time.  Her favorite thing to do is sit with my husband and me on the couch.  She just think that it's the greatest thing that Drew and I hug.  If Drew and I are sitting with each other, she needs to sit on our laps.  She really does have an uplifting vibe about her.

Never Ending Rash

Liv has had this diaper rash for about a month now.  We have tried 3 different kinds of meds and today we were prescribed another.  I feel so bad for her.  I know it itches.  I'm hoping this works.

Heartbreaking

http://www.nytimes.com/2011/10/16/opinion/sunday/notes-from-a-dragon-mom.html?_r=1&src=tp&smid=fb-share

Left Behind

There's been times that we've missed out on things because Liv can't get around well.  Before the walker it was even harder.  It's not that I expect everyone to cater to Olivia's needs, that's my job.  But I wish there was a way to be included all the time.  I guess this is the way things are going to be and I need to accept them.  We can't go to parks with friends because Liv can't climb on anything.  We were supposed to go with friends to an orchard today but plans changed and they went to another orchard.  Since there were no pictures on the website, I had no idea if Liv would be able to walk around on pavement.  So we didn't go.  I met up with her nurse that has a disabled son at the original orchard and had a good time.  It breaks my heart to know that there are going to be times that we will be left out.  The children she grew up with are just getting too skilled for her. I guess I need to find a way to meet parents of special needs children.  I need to find kids that go at Liv's speed.


I don't want anyone to be upset when they read this.  This is a blog about how I feel and what's going on in my life with my child.  I needed to express this.  Please don't take this the wrong way.

Stomach Bug Again!!!

This child and this bug is out of control.  I guess that's why there was pooping issues this week.  She gave it to me and her sister, so we were throwing up last night.  I never had stomach viruses that made me throw up until I had Liv.  Despite how I felt last night, I couldn't stop thinking about how blessed I am to have her.  It brings tears to my eyes.  She is an amazing child.  She is very social.  Her therapist that see her at daycare were telling me that she walks up to the kids in the cribs and talks to them (well babbles).  She has to make her rounds to everyone, and this is true at church as well.  She totally ditches us and goes to see everyone else at church.  She's incredible.  I can't imagine life without her!

A Stinky Situation

Liv is on a new poop schedule.  It is when she leaves the house and is on the way to daycare.  The problem is that it goes everywhere.  I spend all this time dressing her up all cute to only be seen in the outfit for about 20 minutes by myself and my husband.  The other day it was so bad we had to wash the car seat 3 times.  Today we thought that Drew could leave a little later to take care of the problem.  She woke up this morning to poop on her bed.  So we thought at least he could leave on time today.  That was the wrong thought.  She pooped again before she left so I had to change her pants.  She also pooped on the way to school.  At least they got to see her cute outfit today.  I'm hoping for a solution.  Sorry if this is TMI. 

GI Update

We went to GI today to evaluate how she has been gaining weight.  She got up to the 10th percentile at 25.5 lbs.  The doctor was very impressed.  We are now reducing her pediasure intake during the day to give her the desire to eat foods more.  She lately has been showing that she wants to eat, so now she should express it even more.  I don't think the night time feeds will decrease any time soon, but that's ok because that's how we have a nurse to help out.

Walking

We decided not to use the stroller today, only the walker.  Wow Liv takes a long time.  She is so interested in everything that is going on around her that she doesn't walk.  Going through Ikea took forever.  At least we didn't have any time constraints.  It would have been easier to whip her in a stroller and go, but she needs the practice.  She loves her walker so much that she freaks out if we pick her up to carry her instead.  That girl is going to be walking by her 3rd birthday!

Insurance Issues

Tuesday was a crazy day!  I got a call around 10:30 am that Liv was no longer allowed to having a nursing staff overnight due to her being dropped from her insurance.  Of course I handed in all of the paperwork to solve the insurance problem, but they said it can take up to 30 days to get it.  I prayed a lot and made phone calls to see what I could accomplish to get Liv a nurse for the night.  I hate going to the welfare office, but it's amazing what you will do for your child.  The nurse that runs her daycare made a phone call to a friend that helps people who have fallen through the cracks of the system with their special needs children.  The reason she was dropped was because we never filled out a renewal.  I never knew about it.  I never knew she had a caseworker that was supposed to make sure it happened.  So the advocacy took our case.  We also found out that during this lapse, insurance will back pay any expenses occurring now.  The nursing agency pulled some strings to allow her to get services since they will get paid in the future.  So after all these calls and prayers, by 5:00, it was confirmed that she would have a nurse.  I never realized how much we depend on these services and how much of a blessing it is to have them for my baby.  Thank goodness for medical assistance for special needs children.  I can't even image how little my daughter would have if we didn't have it.  The insurance hasn't been settled yet, but everything is being taken care of, so I'm very happy.   It's nice to know that there are good people out there and you can lean on them at a time of need.

Updates

We got Liv's evaluation back from Elwin and it's a little tough hearing all of the delays that your child has.  As a parent you tend to think they can do more than they actually can.  On a good note, because she is so delayed, she will get many services to help her out.

A couple of days ago Liv got topical staph infection but at least the meds are clearing it up quickly.

She is getting her button changed today because it's been about 3 months.  They said we can do it ourselves, but I'm not ready to see her stomach.  Yuck.  The nurses can change it.

Apparently I was supposed to do a renewal form for Liv's insurance.  The problem is that I've never got one, so I never knew that I was supposed to do that.  Her insurance is terminated as of tomorrow.  I did apply for it again on Tuesday and I'm hoping to get a response soon.  She will be covered and since it's an easy case, I'm just hoping for it to happen quickly.  We made sure we stocked up on meds and supplies quickly before it expires.  Her nursing care will still continue because any expenses that occur during this lapse will be back paid when I get the insurance again.  So I'm very happy that she will still go to medical daycare and have nurses.

Oh the joys of everything we have to go through to make sure Liv gets what she needs and deserves!

A Long Week

I'm so happy that it's Friday.  Liv had a great week and now I'm looking forward to spending the weekend with her.  I took her swimming today after school.  She did really well.  I bought her an inner tube that is small and she was able to keep herself in it without me touching her.  It was great.  She has been walking everywhere.  She never wants to stop.  I wonder how much longer until she walks independently.

This Past Week

On Tuesday, Liv had a swallow test to determine if she aspirates when she swallows.  Liv being a child that barely eats, didn't eat the barium.  Big shocker!  I don't think that it's a test that she will complete any time soon.  On a good note, I took her walker and made her walk the whole time.  CHOP is a big hospital to walk around.
On Wednesday, Liv had an evaluation for Elwin.  They will provide her services when she turns 3.  She was tired, so she didn't show them everything she can do.  That's actually a good thing.  I want her to get as many services as possible.  She did go straight for the baby doll.  I guess it's time to get her some more.  We don't find anything out for 60 days, so the waiting begins.
Liv's friend Abigail had an outdoor birthday party today.  Livy just loves being with her friends.  They had a radio flyer wagon for her to sit in and Blake pushed her around most of the time.  She even put stickers on a tambourine as a party gift.  Everyone is saying that they are seeing a huge change in Olivia with how self sufficient she is getting.

Too Much Attention

I don't know what it is, but lately everyone feels the need to stop us and tell us how beautiful my daughter is or how her hair is just gorgeous.  I admit, my daughter is beautiful.  I just have never felt the need to walk over to someone that I didn't know and tell them how cute their child is.  We even had a modeling agency want us to sign her up.  I mean is everything center around looks?  She's 2.  I really don't want her thinking that she has to look beautiful for people to notice her.  Besides, beauty comes at a cost.
I've also noticed more people staring when she has the walker.  I'm glad she doesn't understand that she's different because it makes me wonder if she would want that kind of attention.  She is getting better with it which means that I will make her use it everywhere we go.  I guess I better prepare myself for the stares.

Still Having Trouble Gaining Weight

Since Liv had that bug a couple of weeks ago, she lost weight.  She hasn't gained it back.  We had to raise the amount of her feeds at night to help.  I hope it's working.  It's always some steps forward and then some back.  I will say that I don't know where I would be without full nights of sleep due to the nurses, especially now that we are both back to work.  It was nice having the summer off, but I think we all craved that routine that we all used to follow. 

Livy is getting better at using her walker.  She definitely can steer it better than she used to.

Next week she has a swallow study and an evaluation for her services.  Even though it's the second week of school, I will be taking 2 full days off.

Livy is missing 2 bottom teeth which is not normal but can be for her condition.  I wonder if she will have permanent teeth.

Insomnia is Finally Over!

So Liv started Trileptal about 3 weeks ago to help with her seizures.  About a week ago we noticed that Liv was having the hardest time sleeping, which meant so did we.  She would just sit and cry.  It was awful.  Yesterday we figured out that it was the meds.  So we took her off of it without a doctor telling us it was ok.  I mean I can't wean her off because I couldn't stay awake for another night.  I was losing it.  So we put her on a back of med just in case and gave her some benedryl to help her sleep.  We figured it out for sure because she napped today and went to sleep at her normal time.  I'm so happy.  I sure was missing sleep.  Well now that we discovered 3 seizure meds give her side effects, I wonder what we will try next.  What a challenge!

The Good, the Bad, and the Happy to be Home

We went to my mom's for 3 days for a visit.  We only make it there once a year due to not wanting to travel far with Olivia.  She lives 3 hours away.  There's only one way to do this - start at the beginning.

Day 1 - The drive wasn't bad and Liv slept through half of it.  We stopped at my gram's to say hello.  We went to my mom's (which is where we were staying) to relax before going out for dinner.  My mom runs a daycare and wanted Olivia to be with her.  I could tell by the way Liv was acting that she needed to have a nap before dinner.  Of course my mom thinks that I just didn't want her to go to the daycare.  If only my mom knew what it was like to be with Liv without a nap and she doesn't nap at daycare.  We went out to dinner with my mom and her boyfriend, grandma and grandpa, and my one sister.  My sister and I haven't been the best of friends lately, so she decided ignoring my whole family would be a great way to make us feel welcomed.  (The reason we aren't that close lately is because she is trying to put her nose in my family business and tell me how to raise my step-daughter.  I didn't agree with her, so she decided to be pissed at me.  I guess my whole family has to suffer from this.  I couldn't imagine being an aunt of a 2 year old and completely ignoring them.)  After dinner, we went back to my mom's to relax then go to bed.  Liv got up several times during the night which made us miss having a nurse so much!

Day 2 - I took Liv downstairs at 6:30 to the daycare so I could sleep a little longer.  I went back down around 8:30 and the children were eating breakfast at table, but Liv was in a high chair off by herself.  My daughter already doesn't eat so putting her away from kids, not the best idea.  I took her upstairs to get ready to go to Knoebels.  We had a great time at the park.  Liv must love park food because she ate way more than I've ever seen.  I took her on a couple of rides.  She won't sit by herself so that limits the amount of rides she can go on.  I was trying to ask the guy at the moon bounce if I could go in with her and he told me that he would get everyone out and let us in there alone.  We had the whole thing to ourselves.  I was almost in tears when he offered.  Liv laughed more than I've ever seen.  She couldn't stand or even sit up, so I bounced close to her to make her move.  I also held her and jumped.  It was so great.  We stayed for a long time so when we went back to my mom's, it was time to put Liv to bed.  Liv hardly slept which meant neither did we.

Day 3 - I took Liv downstairs to the daycare at 8 but she didn't want to stay.  My mom text me about taking Liv to a playground for a little while with the kids from daycare.  I told her that I need to get her ready to go but really I was thinking what the hell is my daughter going to do at a playground?  Just sit there in the grass?  She doesn't walk.  That would be like taking a 6 month old to the playground for an hour and thinking that they are just going to go off and play with the other kids.  We decided to go to the public pool.  It was great when I lived there, but they are now trying to update it to the point that it just sucks and nothing is open.  There wasn't even grass to lay a blanket on.  Like my daughter is going to sit in a lounge chair.  So I walked around the pool and Livy gets stung by a bee in the neck.  Of course I'm scared she's allergic.  Luckily she only broke out in a rash.  I took her back to my mom's.  My mom wants her to stay at the daycare but I want Liv to nap before we leave for the trip home.  If she's really fussy, we couldn't make a 3 hour trip.  I called the developmental ped. to find out how much longer it's going to be until she can get an appointment.  They tell me that they never go the paperwork that I filled out and sent back in May.  She's like why did you wait til now to call.  I said that I was quoted a year and wasn't trying to bother them.  I should have known better.  She is shipping new paperwork and I get to start all over.  Trust me, this time I will call every week.  I was so frustrated and in tears so I just wanted to go home.  By this time, Liv is napping.  We pack everything up and head out.  Last night we slept through the night because we had a nurse!!!!

I wish my mom wouldn't look at it like I'm holding my daughter back from doing things other kids do but that I realize what level she is at and that I do things with her according to her level and not age.  It doesn't mean that I'm hindering her learning.  I try to get my daughter out of the house everyday.  I take her to playgroups and she has tons of therapy.  I guess she won't understand because she lives 3 hours away and doesn't see my work on a daily basis. 

Creating a Will

We put a deadline on ourselves to create a will.  It's the end of the month.  Olivia's insurance company told us that it needed to be done.  We just have so many issues with this.  My family doesn't live in the area so that leaves Drew's sister.  Wow one person.  We have to have back up plans for back up plans for this will.  Drew doesn't want to get non-relatives to take care of Olivia and I don't see how that's feasible.  We need back ups!  It's hard knowing that Olivia might need life-long care, so it is hard to ask people if they would want to be part of the will.  Taking care of Liv entitles lots of appointments between doctors and therapists.  It's a lot to ask a family to do.  I do not think my daughter is a burden, but I could see how she would be to a family that is not hers.  This is very stressful!!!  So pray for us in being able to find solutions to this problem.

Thanks

I wanted to thank all of my readers.  I have reached past 1000 hits!  It's so exciting to know that there are so many of you that find my life interesting enough to read about!

Thanks so much!

The Bug is Finally Gone

Well she had the bug until yesterday.  We had to cancel all plans from Tuesday evening til Friday.  She didn't get to work with therapist.  She didn't get to go to the mall to practice walking.  She didn't get to go to play group.  This upcoming week we will only be here Monday and Tuesday because we will be visiting my family for three days.  She won't get a lot of practice in while we are there.  I don't have a lot of time left to practice with her since we start back at work September 1st.  It's nice taking her to the mall when there's nobody there for her to have lots of room to walk around.  I am going to miss this extra time I have been able to give to her.  Tomorrow is a GI appointment and she lost 1.5 lbs due to being sick.  I know they aren't going to reduce her feedings because of that.  I was really hoping to reduce the daily feedings so she would get hungry and eat food, but I obviously want what's best for her.

My Anniversary

We have learned that anything planned can be altered in a second depending on Olivia.  Tuesday is the day that she goes to daycare and it's our anniversary.  Of course we thought this would be a great time to go out for a nice lunch baby free.  The nurse wakes me up at 5 am to a crib and baby full of poop.  After clean-up, I put her in my bed to go back to sleep.  She threw up all over.  So her dad took her downstairs while I showered, put everything in the wash and remake our beds.  Then Liv got a bath (she smelled so bad!).  Luckily the daycare said they would still take her since it wasn't happening frequently.  So we dropped her off and went to lunch.  At least we were still able to go.  It's hard making plans with a child that can change your direction at the drop of a dime. 

Beach Day

We went to Ocean City, NJ yesterday.  Liv isn't a fan of heat.  We took a blow up pool and spent a lot of time filling it up, but it was worth it.  She screamed when I took her in the ocean.  The water in the pool was warm from sitting in the sun.  She spent an hour and a half in the pool.  We went with our church so there were other young kids that joined her.  She had a blast.  To bad she's not a big fan of the beach though.  She has no clue how to play in the sand either, but that's not really a big deal for me.

On the Move

On Tuesday, Liv stood for her PT all by herself for a couple of seconds.  She also has walked 3 steps to me 2 times now.  Since we got the walker, we have seen a great deal of improvement.  She gets so excited about walking.  I haven't had time to take her to the mall to practice this week, so I might try to go twice next week.  I would love it if she could walk for her 3rd birthday!

Recent Appointments

Last week we went to her ophthamology appointment.  He thought everything looked great and we don't have to go back for a year!  We have never been told that before!

Monday I took her to neurology and she is getting started on a second seizure med.  I asked about her obsession with the girl in this one book and the doctor said that it can be a sign of autism but it is common for children with brain dysfunctions.  Her obsession with me is due to her mental age still being 8-10 months and is at that stage that she can't leave mom.  Problem is that we have been in this stage for over a year.  She told me that Liv would probably go to a life skills school rather than special ed.  She also pulled her attending in to see Liv because she has never seen a child with hypomelanosis even thought she has been a doctor for 20 + years.  Her doctor told me the only reason she was diagnosed so quickly is because she was looking up neurological problems and came across hypomelanosis a week before she ended up in the ER.  Where would we be if she looked that up a week after?

Today we went to the feeding clinic to get some suggestions of feeding Liv.  She obviously has many issues but they only gave a 2 suggestions to work on daily for 6 weeks.  At least we won't get overwhelmed.  But it is making me see that this is going to be a really long process! 

A Rough Weekend

On Saturday I went to a wedding while my mother watched Olivia.  We had a new nurse coming for the night which made me nervous.  We got home around 10:30 and Liv was asleep.  The nurse kept mentioning that Liv has a runny nose.  I go to bed and Liv's cries wake me up at 4.  The nurse keeps talking about her runny nose and refused to give her a binky.  I looked at her stomach and noticed her gtube was leaking fluid.  I said something and the nurse was still trying to wipe her nose.  She said that she should suction it.  I told her to never do that at night.  So I ask her to go get tylenol and she brings me the childrens and adults.  At least she brought the childrens.  We decided to take her to the ER and the nurse was still following me trying to wipe her nose.  I signed her papers and told her to leave.  I called the agency and told them that she isn't to come her again!!

She had 2 seizures today.  It's been awhile since the last one.  This time they both lasted longer than 5 minutes.  At least we didn't have to go back to the ER.  Two days in a row would be too much!

Church Awaits

Next Sunday I will be joining Circle of Hope.  I have to tell my story that day about how I found Christ.  In order to keep from crying, I decided to write it in a poem.  Here it is!

I was born in California
To my mom and dad
I thought everything was great
But to my surprise it was bad

The abuse that he showed me
I had to be strong
But he left me wondering
Did I do something wrong?

At the age of five
He left out the door
Even though it was my birthday
I would see him no more

My mom got remarried
And he adopted me
He's loving and caring
I was happy as can be

Two years go by
And a sister comes along
It's what I've always wanted
To have a friend lifelong

Church becomes our Sunday routine
Believing in God
And the love that he brings

At Church it was always
The same old thing
Sit down, stand up
And sing, sing, sing

High school comes along
And questions start to arise
Should I really believe in that Big Guy?

At the Christian school
The kids were mean
I wondered if this was even my scene

There really was no help
When the teachers couldn't answer
The questions I yelped

Another sister comes along
Someone for me to adore
To love and hold
But she became a chore

My parent wanted to get a divorce
Leaving me in charge of this course

So out the door my mom went
Leaving without even asking my consent

My baby sister needed to be cared for
So when she cried at night
It was on my bed
That she snored

Mornings were rough
When you are up at two
I still went to school
What else could I do?

My mom got a place for us to go
But sister # 1 would not show
For she was invited to live with her dad
But me and my other sister
He would not have

My dad and his family never called
And once again I'm alone
And feeling appalled

How can two dads walk out on me
To love someone should last an eternity
But that's just not how this is going to be

I started to rebel
And do the wrong things
I hated my life
Because not even my Lord would pull some strings

I felt all alone
With a great big void
So I turned to boys
To help me self destroy

In college the partying was too much
A drink here, a drink there
It became a great crutch

The hole was almost filled
With boys and booze
But no matter how much
That emptiness still had a fuse

Along comes this guy who likes me
We get along great
How can this be?

We grow close to each other
And I knew I couldn't ever love another

It's been four months
We find a great house
I'm so excited to live
With my soon to be spouse

Four more months go by
And the wedding bells chime
Finally someone that's all mine

Soon to follow
Was our baby to be
Will that void be gone?
We'll have to wait and see

Some complications during
Pregnancy arise
But we have high hopes
For our little special surprise

Out she came
Early in the morning
She was quickly removed
And we were mourning

So at the hospital
She would stay
It was very hard to have my baby
So far away

Eleven days goes by
And she comes home
And all we can say is
Shalom

Six months goes by
And she became limp and awry

So in the ambulance we go
And the fear sets in
No matter what is said
I cannot lift my chin

We stay overnight
And wait for the bad news
My daughter had seizures
While I caught the blues

Again I feel failed
She was diagnosed and I cry
There was no way
To have a dry eye

Oh whoa is me
I begin to feel
That God above
Was just no big deal

Much more happens
While time goes on
I begin to feel slightly withdrawn

I ache for my love
Who is in so much pain
Can't God just
Fix her little brain?

Oh that's right
I didn't believe
Which is why I still
Continued to grieve

A neighbor tries to help me out
A moms group for me
Without a doubt

I needed support and love for strength
But the problem was I needed a long length

When they started to pray
I didn't know what was going on
All I could think about was being gone

Then they wanted to know all about me
So I told them everything that I see

My daughter's unhealthy
And delayed in every way
But they still all wanted me to stay

The love and sorrow
That I saw in their eyes
Was something that
They could not disguise

Week after week
I attended cell
Trying to see
If it would help me get well

There's only one way
To fix this spell
And it was to love Jesus
And to love him well

The hospital trips were still tough
But I prayed in the Chapel
Without a puff

There was strength starting to grow in me
For I found a love that's true as can be

God was on my side all along
He just needed me to listen to his song

The girls got me started
Along this path
So I came to the AMPMs
And never looked back

To my surprise
There's even more of the same
Everyone loved
The fact that we came

All of you have showed me love
And so has the Man up above

For my daughter was made special for me
To help complete my family

A Wonderful Life

Everything has been going so well.   I mean I did take Liv to the ER this week for that stupid rash that keeps reappearing, but it's just been a good, healthy time.  Liv got her walker and walks in the house.  She gets tired quickly, but we always practice.  The nursing is working out well too!  Well it's summer now and I'm trying to keep Liv busy.  We are going to try to get out everyday.  I think we've missed 2 so far.  I guess I should make plans for tomorrow.  Maybe swimming.  She loves it.  I'm hoping things continue in this direction.  We needed a break from the chaos.  I have some pics that I need to post, so I will hopefully get them up in the next couple of days.

Nursing Help!

Yesterday Livy's insurance company called me to update their information on her health problems.  They didn't have it documented that she has a g tube.  Since she gets overnight continuous feeds, she was approved for 8 hours of nursing care during the night - 7 days a week.  This is going to be such a relief on us.  The milk is only good for 4 hours, so after that, we have to wake up and change the milk.  Not to mention the times she gets up for a binky.  Last night was rough, so I'm super glad that we will be getting help.  Her tube came unplugged and her stomach acid and milk all leaked out onto the crib.  She was so upset.  At least we won't have to worry about this happening anymore.  We will be interviewing nurses next week and then getting it started.  Because she is considered a level 1, she is only allowed to have a registered nurse.  Even better!!  There's always hope!

A Good Month

So for the past month, Liv has been doing well.  It usually works like this.  Bad humps then good.  We just work on surviving the bad ones to make it to the good.  Then we easily forget how hard it was and get slapped with another hard one (really not trying to be sexual). Of course we are enjoying this time.  Liv got a button tube place back in and it's working great this time.  Feeds are great.  She is up to the 7th percentile in weight and we will be discussing what feeding strategy we are going to use when we go to GI on Tuesday.  As some of you have seen, Liv took her first steps this past week.  Yes it was with a medical walker, but it's just like her walking alone.  I can't stop watching the video.  For those who missed it, it's posted on my facebook.  The walker she was using was one at her daycare.  We had her fitted for one and we are just waiting for it to come in.  They said up to 3 months but really don't think it will take that long.  We are getting anxious for it to come in so she can practice all day.  We went swimming yesterday and she was using her float.  She was feeling adventurous and would swim away from us.  It's good to see her getting more confident with swimming.  I would like to get her just a vest this summer so she can really start swimming.  At Liv's endocrinology appointment we found out that she will probably only reach 4'6" so she will need to take growth hormones.  They aren't starting yet because she is a good height for her age now, so we are just seeing what happens.  They will also check her ovaries at the age of 9 to see how damaged they are.  They will then start her on birth control to help her get estrogen and a period.
Summer is almost here and that means lots of time with my baby.  I am going to be taking her all over and tiring her out.  I plan to do something everyday.  She is not just sitting around the house.
Here's to a good month and a future of time off to spend with my baby!!!

Catching Up

So things have been busy because Liv is healthy for once.  I keep busy by playing with her all of the time.  She said mama for the first time yesterday.  She used to call me na na.  My husband and I have been bracing ourselves for her to get tested and the results to say that she is MR.  I'm trying to accept it, but it's hard, she's my only child.  Maybe she just has delays, but I think it's more than that.  She could say about 4 words, but she forgets hi and bye.  She forgot all done but now remembers it.  On a good note, she has been laughing like crazy.  She has been in such great moods.  She laughs all day long.  She loves to watch Mickey Mouse Club House.  She is such a great child.  She is starting to look more like a little girl than a baby.  I hope she starts developing more.  She does have more strength and loves to practice walking.  Next week she has her appointment to get fitted for walking devices.  I hope that will help her have independence by walking herself (with the device).

Feeling Better

So I made a plan for myself.  Since our house is a disaster zone, I have decided to clean one room a day.  That way I'm not overwhelmed by cleaning several.  Plus I'm a scatterbrain when I clean.  I clean up one thing and then take it to a room and clean something in that room and so forth.  After an hour, it doesn't look much different.  I'm not letting myself do that anymore.  One room a day and I'm sticking to it.  Also I went to pilates last night.  I kinda thought it was too easy.  I have pilates dvds that are harder, but I pay for a gym now and wanted to take advantage of the classes.  I'm finally making time for myself.  It felt real good last night.  So I'm hoping for that tonight too with modern dance!

ugh

I haven't written even though this is probably the time I should be venting the most.  I can't believe how many times we have been in the hospital lately.  It's been 5 times in 2 1/2 weeks and a total of 8 days in 17 days.  I really don't feel like I can handle anything else.  I've spent three weekends in a row sleeping there and I can't do it anymore.  I used to live for the weekends to catch up on sleep, cleaning, and relaxing and I've experienced none of that.  I feel like I need a maid to live here and not get paid because we all know that teachers are poor.  I need a break.  I really don't want to resent my daughter, but I hate that I have no life.  I knew having a baby would change things, but I had no idea it meant giving up everything, and I seriously mean everything.  I never get to go out with friends and I never get to go to bars and see my husband play and I never get to go out with my husband.  I mean who is going to watch my daughter.  I can barely handle it, so how is anyone else going to help?  I would give anything to not have to work.  I just need time.  I can't work all day and then deal with a sick child all the time.  I love my daughter to death.  Why does she have to go through this?  Why did this happen to our family?  I thought I was past this point, but now that there's so much going on, I'm back to it again.  I feel like I'm losing hope and faith.  I never in a million years thought this would be my life.  I never thought I would have a child that can't walk or talk to me.  I usually look at the positives of her milestones, but I just don't have it in me now.  I feel so burnt out.  I wish we had the money to get away.  I would give anything to go to Disney.  Liv just adores Mickey.  I'm sure it will take us awhile to save up that kind of money.  I just want to get away, even if it wasn't Disney.  We need a break away from this place.  We just need to go somewhere that we can enjoy the day and relax.  I don't think I know what that feels like.  Considering the last escape to AC resulted in a seizure on the way home.  We got to put over on the side of the highway to undress our daughter to give her meds rectally to get her out of the seizure.  I think I'm going to try to get out of work again, but I don't know how easy that will be since I was out 6 months last year.  I thought spring break would rejuvenate me, but we spent time in the hospital instead.  I would love to have another child, but I mean really, how could that be feasible?  I would love to know what it feels like to have a child more on their age level and one that eats.  Don't get me wrong, Liv is great!!!  She is so affectionate.  She is my life.  But I just wish I didn't have to give so much of it up!

At My Wits End

I know it's been awhile, but that's because Liv has kept me so busy.  I really haven't gone to work and my husband and I haven't been sleeping.  Liv is in pain.  I've seen 3 doctors and talked to 4 other doctors this week.  She is on meds, but she is still in pain.  I really don't know what to do.  We are going to give it one more day.  If she is fussy tomorrow, we will go to the ER.  If they can't do anything, we are going to ask them to take out the tube.  Her eating more and gaining weight at the cost of her being in pain is not acceptable.  I'm so burnt out and feel completely helpless.  I have done all that I can.

A Sigh of Relief

All of your prayers were heard.  I'm so blessed that God helped us so quickly (and the doctors).  Liv is doing so much better today.  It's amazing what meds can do.  Her breathing is normal and she is off the tube.  She started eating some Pediasure on her own today.  It's not much, but it's good to see her have an appetite. They will start the feedings in the tube tonight.  It won't be the full amount just to see how she does with it.  We will get out Thursday morning.  Trust me, it can't come quick enough.  Both Drew and I have to go through a training in order to take her home.  They couldn't schedule it until Thursday.  Oh well, it's supposed to be nasty outside tomorrow anyways! 
Whenever I'm here, I always realize how much worse this could be.  Yesterday I met a mom in the prayer room.  Her son is 4 and has cancer.  He had gone through 15 months of treatment prior to now, but it's back.  He is terminal.  The whole time we talked, she was trying to comfort me.  She came to see Olivia.  I wish there was something I could do, but she kept saying the God has a plan for him.  It's good to see that she believes that.  She said that he has opened her to a world she never knew, which I have mentioned that to many of you before.  And I know my friends with special needs children know exactly what I'm talking about.  I wish there were extra prayers that I could say for Trey, but I guess this is the best I can do.  I will always remember her and her story.  She has touched my life forever.  I have never seen someone so strong.

Can I Get a Break????

This can go in the books as one of the worst days ever. We know that nothing is ever simple for this girl. In surgery they found a hernia and fixed it. That made the surgery longer. I went to the prayer room. I couldn't stop crying. This poor thing. The other people in there gave me hugs and wished my family he best. I was starting to feel better. I love when people send love my way through text or facebook, but every single one makes me cry. I feel blessed to know this many people care. So here we are with her having trouble breathing and her heart rate up. Yeah I'm scared to death. And for about the 3rd time in her life, I'm past scared. What would I do without her? Why does she have to suffer so much? I've already gotten closer to God to help fix this. I guess he needs me on my toes. I'm so scared. I feel like I could puke. How do nurses look at babies like this? I just need some breathing room. How do I get it? If only she would eat. Why can't she just eat? How am I ever supposed to go to work? Why can't I afford to stay home with her? I can't stop crying. Why isn't she waking up? How much longer will I feel like this?

Biggest One Yet

Well today is the day for the biggest surgery she's ever had.  This is her 4 time being put under and she's only 26 months old.  She is going to have a hole in her stomach with a tube in it.  But I realize it's the right thing because she has been sick all week and won't take anything but formula.  It gets very frustrating.  I think it would be easier to deal with her delays if she didn't have all of these health problems, or vice versa.  When she is sick, she is super clingy to me.  I can't leave the room, even if my husband tries to entertain her.  I really need to start packing, but it will be even harder without my husband.  He should be getting back soon, but I really just want to get started.  I guess I feel in some ways that if we are completely packed and ready, I took care of the only thing I can be in control of today.  Last time we hit a ton of traffic and she had a seizure, so all of the delays had nothing to do with anything I could help.  I don't know what I would do without Mickey's Clubhouse, it at least lets me sit in the room without her crawling all over me.  It definitely helps in the hospital!  Wish us luck!

Everything Is Happening So Quickly

Yesterday I stayed home with Liv because she hadn't slept in 3 days.  I needed to take her to the doctors to find out what's going on.  She just has a little cold, but since she has a tube in her nose, she really couldn't breathe.  Poor thing.  My husband and I decided that we were just going to push through with getting the gtube surgery.  This way we wouldn't have to jam a tube down her nose and tape it to her cheek, however, it's surgery for putting a tube right into her belly.  I had a pre op appointment today and the surgery is scheduled for Monday morning.  I can't believe she is going to have this so fast.  She's going to have it before we go to DC.  I never imagined this.  I hope this is the right decision.  The doctor was going to make her get it anyways, but we just jumped up the time line.  I'm sure I'll write in on Sunday saying how nervous I am.  Where's the relief?  Where's the day of relaxation?  Where's the calmness?  When can I breathe again?  I guess whenever she walks herself over to me in the walker and gives me this huge smile of unconditional love.

Frustration!!!

I guess I've been lying to some of you.  If I've talked to you in person, I've probably said that everything is going well.  I guess I've been doing that throughout most of Liv's life.  I tried to make it seem not so bad, but at times, it can be.  I don't want everybody to think everything I say is always negative.  I mean it seems like she might get better at some things, but then something else will come up.  It just seems as if there's never a break.

Everything was fine about the first week of the tube, but I'm ready to pull the plug.  I think we can do that as parents, right?  Liv has stopped eating all together.  I was under the impression that I would be less stressed if she doesn't eat a large amount, but nothing at all.  Of course that stresses me.  And on top of that, she wakes up every hour.  That's more that when she was an infant.  I think her stomach is hurting or something.  We are going to try this new kind of gas relief tonight.  I really hope it works because I'm running on empty.  I left a message for the doctor so I can't wait to hear from her.  We need to come up with a better plan.  Besides, she is feeling heavy.  I think she is gaining too fast.  I just feel like I need a break.  I would love to take a day off, but I would just worry and think about her the whole time anyways.  Maybe a spa day would be nice, but we can't really waste the money.  I guess just a good night's sleep would help.  Spring break can't come fast enough!!

It's Been Awhile

I guess I've been busy and for once things are going smoothly.  No doctor appointments until April!!  Feeding tube is working well.  She gained 2 pounds in a week.  She is walking with holding our hands, and does a great job at it.  She likes to stick out her tongue now that she knows how.  Still loves her baby.  The only complications are not getting a full night's sleep.  She gets up twice and we have to get up for the pump at 2 am.  So we are still tired when morning comes.  She has been in great moods and no sickness!!  She's such a delight!  She is full of hugs and kisses.  She actually started pushing Drew away when he hugs me because she wants hugs.  She would rather spend the day sitting on our laps than playing.  But we do make her play because that is a huge part of her development.  I can't wait to get home and give her a great big hug.  I hate missing her at work!

Livy's Baby

I bought Livy a baby today.  She's never played with one except for the one time her speech therapist introduced it to her.  She instantly loved this doll.  I'm shocked that she even knows what it is or what to do with it.  She was rubbing and kissing it.  It was the cutest thing ever.  She also tells it secrets, even though she tells loud secrets.  I posted a pic on facebook so check it out.

We Did It

Liv pulled out her tube this morning.  I figured that we would put it back in when Drew got home.  I was nervous.  I prepped everything and got started.  We did it!  All by ourselves.  It's the best looking one too.  I guess it didn't take too long to feel more comfortable jamming a tube down our daughters nose. 

A New Trick

Yesterday when it was time for a bath, Liv pulled herself up to a stand for the first time.  She used the side of the tube to pull herself up.  She was so excited to get into the bath that she needed to peek in at the water before it was ready.  She is getting stronger everyday!  I can't wait until she can walk!

Life at Home with the Tube... So Far

Things aren't going as well as I had hoped.  I kept feeling dampness around her last night, only to learn this morning that her plug wasn't all of the way in.  That means she was leaking stomach acid on her bed all night.  WHOOPS!  She was running a fever and we gave her some Tylenol.  Then she puked 10 mins later.  Thank God a nurse is on their way here for after care.  I mean if it wasn't the tube that made her puke, then what was it?  Our shipment of all of the supplies came, which is huge.  I feel like our home is being overrun by our daughter between toys and medical supplies/medicine.  On a good note, the pump is small and very transportable.  That will make the trip to DC a little less stressful.  The pump goes in a small book bag and it hooks up to her tube.  People won't even notice anything is happening.

Well the nurse just left and I'm feeling a little more confident about all of this.  I hope it works out tonight.  Wish us luck!

We're Still Here

Everything went yesterday.  There's always hiccups in procedures with Olivia.  We knew that, but I guess for some odd reason, we thought this would be different since it's a 15 min procedure.  We went back to the waiting room at 11.  They checked her vitals and we thought everything was moving quickly.  They were supposed to take her to the table at 12:30.  Liv has a seizure at noon.  Since she had some on Saturday, they were concerned.  We told them that we knew coming in today that she would have seizures, but since she usually doesn't have 2 sets of them in a week, they needed to get it cleared by neurology to proceed.  She didn't go back to the table until about 2:30.  So much for a quick 15 min procedure.  We got up to the GI suite around 4.  They put the feeding tube in around 6.  She did well with her night feedings.  She of course is teething (why not?).  And not just 1 tooth, it's at least 5 teeth.  We are waiting to get some orajel so she will take a nap.  In order to go home, we must have training.  The training classes are booked today, unless they get another nurse to help.  If so, we can do the training at 4 then go home.  If not, we are booked for a class tomorrow morning.  We should be home tomorrow evening at the latest.  As part of the training, we have to place a tube down Liv's nose.  We have to do it before we can go home.  I'm not looking forward to it, but it's just another thing that many other parents experience, so why not me?  I feel like I could be a nurse from all of the things I have to do for my daughter.  Maybe I got into the wrong profession.  It looks like Drew got her to fall asleep, so it's time to go eat!
On another note, I hope my father-in-law is doing well.   Please keep him in your prayers.  He was on the OR table the same time as Liv yesterday.  He had to get a pacemaker. 

This is It

Well at 11 am we need to arrive at the hospital for Liv's procedure.  I'm mostly nervous about not being able to give her food.  She is cranky when she is hungry (just like her mother).  I have to wake her up at 8:30 to give her meds while she can still take water.  I still have to pack our bags.  Ughhh  I hate sleeping at the hospital.  They are the only nights I've been away from my husband.  Well prayers, fingers crossed, and hoping for a quick, easy procedure and no seizures, please!

All Systems A Go

Well we were cleared for her to still get the procedure and feeding tube.  In two days, whenever I look at my daughter, there will be a tube coming out of her nose.  When we go to the Epilepsy Walk in DC, she will have a tube coming out of her nose and we will have to take all of the machinery with us.  Oh geez!  I guess I never realized anywhere we go, we will have to take all of the equipment until just now!  But it will make her healthier, I think.  I think it will sink in even more on Monday.  Who knows, maybe a miracle will happen and she will only be on it for a month!  Bless my child!

Oh What A Night!

Ughhh.  Liv had a fever of 103 and meds weren't helping.  I guess it's because when we gave her ibuprofen, she puked it back up.  We kept putting wet, cool compresses on her, but we could only get it down to 102.  Liv likes to take up most of the bed and she would not let us put her in her room.  Besides, when she pukes, she doesn't turn her head, she just chokes.  So when she throws up, I get scared to put her in her room.

On the upside... we got Tylenol this morning and about 10 mins after taking it, she started to feel better.  She is playing around with her toys right now.  Drew is out getting her prescription now.  I still hope for the procedure on Monday, but I have been told it's doubtful.

Fingers Crossed

Well Liv does have an ear infection and she might not be able to get the endoscopy.  This is frustration because we have been waiting 2 months for this.  It's hard to anticipate and get your thoughts and feeling ready for your child to have a procedure.  Now it might be postponed and we have to go through the waiting game even longer.  I'm hoping her doctor will say she wants her to get the feeding tube now and do the procedure when it's not winter.  Well whatever happens, was meant to happen.  On a good note, Liv finally reached 20 lbs.

Of Course She's Sick

I got a call from the daycare today that Liv has a temp of 102 and they think she has an ear infection.  We are only 4 days away from the procedure.  We call in tomorrow to find out what time we are supposed to arrive for the procedure.  They could cancel it if they is sick.  I really don't want to put this off.  I hope they still do it.  So hopefully Liv will be completely better by 3:30 tomorrow and not have an ear infection.  Oh please pray!

Pre Op

Today was Liv's pre op.  We sat around for over an hour for a 15 minute check.  It was mostly just asking us questions about Liv and previous times she went under.  Oh well, at least it's done.  Less than a week until the procedure.  Not looking forward to spending a couple of days in a hospital.  Prayers for a single room and everything ending up ok.  Hopefully no seizures this time!

Busy

I've been busy this week and that's the excuse for the lack of writing.  Nothing eventful has happened.  We went to a neighbors birthday party (one of Liv's friends) and I couldn't stay long.  Liv is fearless about commando crawling through the rooms, but I'm not like her.  There were a lot of adults and I was worried she was going to get stepped on.  She can't walk so I don't think people would see her that well.  It does get hard watching children younger than yours doing more things.  I know Liv tries hard, and that's all that matters to me, but sometimes it would be nice to brag about the new thing my child just learned.  I know I can still do that, but I would love to know what it feels like for my child to be the first to learn something new.  Oh well.  I am getting nervous since the procedure is in a week.  I keep picturing my daughter with a tube coming from her nose and all of the pictures that will show that.  At least we got 2 years worth of pictures without it.  It makes me wonder what she is going to think when she looks back at her baby photos.  Well I just hope she doesn't need it for too long and it will just end up a dusty old picture in our memories.  I do try to remember the good times over the times in the hospital.  I guess it's time to start prepping myself for staying a couple of days in the hospital.  It's only a week away.

Evil Boss Strikes Again

On Friday I typed up a letter for the principal to sign proving that my husband and I work there Monday through Friday 9 hours a week.  This letter is for the insurance company to pay for Olivia to attend medical daycare.  She wrote back stating that she won't sign for that much since we don't work that much.  So today I gave her a blank one to fill in the time.  She won't sign that either.  So I had to go to the district and ask them how I can get verification.  They are going to take care of it, but what the bleep?  I mean does she not know if I work there?  What the hell is her problem?  My daughter could get kicked out of daycare if she isn't approved.  She can't get approved if I can't prove that we work.  I swear to God if she gets kicked out, I will make her wish she didn't mess with me.  And she would lose a teacher because I would have to stay home with Liv.  I just don't understand her.  Even if you hate me, you can't sign a paper that proves I work there?  Well I know where she will end up and I know she will eventually get hers.  She can suck it!

Milestones

After having children over for Liv's party, we came to the realization that she is really far behind mentally.  I had no idea that children 1 1/2 can show you where their ears are and know that a bunny hops.  Olivia can't make connections to things.  I think she looks at all of her toys like they are toys and not a specific stuffed animal that can do things in real life.  I never noticed how far behind she was until Saturday.  Even though she doesn't make connections and is no where near where she should be, I still feel like she is an amazingly smart girl.
At the party, Liv stuck her tongue out.  Believe it or not, this is a milestone for her.  She has oral sensory issues and still doesn't chew her food.  Which she used to get by on, but  now needs a feeding tube.  She has never been able to work her tongue.  I yelled across the room to Drew that she stuck her tongue out.  I could tell the other parents are like what's the big deal.  I tried to explain that it is huge for her, but I don't think they get it.  If anything, I am able to notice many more milestones because they happen more slowly.  I think people take our natural body movements for granted.  I know I had until I had Liv.  But the even better part, is that she did it the next day too.  Liv tends to forget things that she has already learned.  It's hard to watch her say all done about 100 times a day and go to us barely getting it out of her once a day.  It's because she forgot that she could say it.  It has happened with other words as well.  I hope her sticking her tongue out will lead to chewing food.

Birthday Party

Liv's birthday party was great.  We have a small house and I was worried about space issues.  The right amount of people came for the space.   Liv had a great time.  She loves spending time with her friends.  I think it bothers her that they can walk and she can't, so we let her get in her walker for a little bit.  It's hard because she plows us over when she is in it, so we didn't want that to happen to a child.  I thought the party was a success and the kids had a great time.

Oh I Missed You Naps!

Last night was not fun.  Liv woke up about 4 times.  She went to bed really early due to not napping, but then she can't stay asleep.  She napped today at daycare, so I'm hoping for the best for tonight.  She will sleep through most of the night.  She will sleep through most of the night.  How many times do I have to wish it for it to come true?

Naps???

Livy thinks she is a big girl and doesn't need to take naps anymore.  It's been 5 days.  She has been going to bed earlier, but she does need naps.  She's been getting up a lot at night.  I hope this works itself out soon.

My Baby is 2

A Sigh of Relief

Livy for the first time in about a month seems to be doing well.  She doesn't seem congested and isn't coughing.  I hope it's because we got her a new humidifier.  She still is a little gassy, but we can handle that.  It's nice to just have a happy baby!

A Yucky Night

My husband, Liv, and I are all laying in our bed and we can tell Liv is tired.  She drinks some more milk and all of the sudden sounds like she is choking.  I quick lean her forward for her to puke all over my bed.  It just keeps coming and we can even think quick enough.  She finally finishes and we start cleaning up that nasty mess.  She finally falls asleep and we put her in her crib.  About 4 hours later she wakes up.  I go over and pick her up to rock her back to sleep.  She is really fidgety and I start to get frustrated because she wants to pull my hair.  I set her back in her crib to go make a bottle.  I hear her start to cough and I run into see her choking on her puke while she lays on her back.  I pick her up and lean her forward while she pukes all over her bed.  Yuck!  So we clean that up and now I'm scared to let her sleep alone.  What would have happened if I didn't pick her up in time?  Why did she not turn her head to the side?  I know she doesn't understand that stuff, but I guess I thought it was just a normal reaction.  So we put her in our bed again to sleep in between us.  I felt so cramp and didn't sleep well, but at least Liv did.  So here I am typing this instead of being at work.  She is really fussy today and I only have 2 hours to decide if I'm going to take off tomorrow too.  Not sure what I'm supposed to do.  She is napping right now and I could go clean up, but I'm feeling pretty lazy after all that excitement from last night.

Fun Time with Friends

Yesterday we went to a birthday party and saw friends from the mom's group I used to be in.  It was great to see the children that Livy used to play with (still does sometimes).  They have all grown and developed so fast.  It's crazy when children a year younger are doing so much more than your child.  Sometimes I can't stay at parties like that because it gets upsetting, but this time I was ok.  I guess it's because I missed everyone or maybe I'm learning to accept it more.  Sometimes I like her learning at a slower pace because it really makes me appreciate every little thing she learns.  We always make such a big deal when she learns something new.  She's just amazing to watch.  She kept smiling at the kids and sometimes they stopped and sat down next to her.  She really enjoyed being there even though she couldn't keep up.  It's amazing what kids can teach us.  They don't see disabilities at that age, they just see Olivia.  I hope it continues to stay that way.

Eek! Teeth Everywhere!

Livy was fussy today and I was getting frustrated.  So I put her in the carrier and make myself dinner and I realize that her gums are so red and swollen.  I gave her some ibuprofen and went to dance class.  My hubby has been here with her so I guess I'll find out how she has been doing.  She is getting about 5 teeth at once.  Oh that poor baby!

Birthday Girl

Yesterday was Olivia's 2nd Birthday!!!  We went out to eat and she is already acting like a 2 year old.  She does not want to sit in the high chair and does not want to stay in one spot too long.  She used to sit at the table for 2 hours with us.  I guess those days are over.  It is good to see that she is doing something that other children her age do.  She has come such a long way and is a delight to have as a daughter.  I can't imagine life without her.  Now I can't wait to get out of work so I can see her.

Epilepsy Walk

Please donate to the Epilepsy Foundation.  We are doing the National Walk this year!  Just click on Epilepsy Walk and it takes you to the donation page.

The Fun at the Hospital

Before you read on, please take a moment of silence for the parents that are watching their child have a seizure right now.

I guess it was inevitable that she was going to have seizures, between the sickness and the weening of Dilantin.  They came to the conclusion that it was from the sickness.  So good news is that we get to keep weening her off Dilantin.

Here's a glimpse of what my day was like.

At midnight I was still awake.  If you know me at all, that never happens.  Something was not letting me even want to fall asleep.  12:30 comes and there's whimpers on the monitor.  I go over and just know she is going to have a seizure and she does.  I sit there watching and pretending to time it since it's dark and there's no clock.  I start yelling for Drew to go get her meds.  I wasn't clear and just said meds so he goes to get tylenol I guess.  I'm starting to get mad that he didn't know what I meant.  What if we don't give her Diastat in time?  By the time he gets it, she comes out of it.  She is usually tired after a seizure so she fell back asleep.  We did give her some Tranxene before she fell asleep.  Believing that the extra med will help us continue peacefully throughout the night, I finally fall asleep.

3 hours later I hear crying on the monitor.  I get up and just know another one is coming.  I sit down with her in my arms and watch the whole thing.  She is whimpering and shaking her left arm.  It's almost a little hard to tell she is having a seizure.  It's really hard to hold your daughter in your arms while she has absolutely no control over her body, even her breathing.  Thoughts just rush through your head.  I actually start to think about all of the other parents that are going to the same thing at the same time.  I start to think about her future and how will she ever be able to live alone.  5 minutes seems like an eternity.  How is the beautiful, innocent child going through this?  What did she do to get such a life long punishment?  The 5 minutes finally come around and I start undressing her and lube up the Diastat.  I give her the meds and change her diaper and dress her again.  I pick her extremely limp body up into my arms and just rock her back and forth, waiting for some sign of my daughter to appear.  2 more minutes pass and my daughter finally arrives, but very grouchy.  She sounds like she's in pain, but how would I know anything about what she feels, she can't talk.  I take her over to my bedroom and lay her in between my husband and I.  I'm to scared to have her sleep alone.  I call the doctor and see what our next steps are since the meds aren't working.  She said to come to the hospital if she seizes again.

I guess we fell asleep and my husband moved her back to her room.  I wake up at 8 hearing my daughter.  I take her downstairs to play and relax since I didn't get much sleep.  She seems to be doing better.  We want to make sure she gets her regular dose of meds, so my husband takes her to the kitchen to get them ready.  After the meds were given, she seizes again.  I just head right upstairs to get dressed and pack a bag.  I mean how are we not going to be admitted?  We have been admitted every other time but once.  And if the emergency meds aren't working, how can we care for her at home?

No matter how many times I've packed that bag, I still can't remember what I need to pack and it seems like an eternity to get ready.  I've told myself a hundred times that I need to make a mastery list of things to pack and have it sitting in my closet so I know what to grab.  I guess deep down I feel that would make it official.  If I type it up and prove that I'm ready for her to have seizures, than I am admitting that she's always going to have epilepsy.  Isn't it weird that we feel if we speak something or write it down that it makes it official.  Like it's not going to happen if we don't say it.  The truth is, I knew we were going to have problems 2 weeks ago.  Livy was supposed to have a birthday party today because she turns 2 on Monday but I canceled it.  It was mostly because we didn't have a date yet for getting the feeding tube, but I knew she wouldn't get it that soon.  I canceled anyways.  I just knew we were going to be in the hospital.  Isn't weird that as parents we know.  I can usually tell when she is going to have a seizure before it happens.  But I never tell anyone because then she actually will.  But reality is, she had seizures even though I didn't say it.

We are off to the hospital and it's more crowded than usual.  By the time we are called back, there's even more people in the waiting room.  The student doctor comes in to get details about everything and she starts to seize again.  I don't think the doctor ever saw one before.  She asked us what we do when this happens and we tell her just watch.  I think she was scared.  At least Liv comes out of it in 2 minutes this time.  We continue telling her everything and then we are left alone.  We eat in shifts.  Livy sleeps.  It takes a long time for neurology to come in. And to make an already long story short, they took blood, gave us directions, and we went home.  We didn't have to stay overnight.

When I'm at the hospital, I'm very emotional.  I cry every time.  I read post that people leave on facebook while I'm eating in a room full of people and I still cry.  Most of the people there eating are people that work in the hospital and probably have no idea what it feels to be in my position.  I try to hold back the tears but everything is usually overwhelming.

I'm just blessed that my daughter is a healthy girl.  Sure she is a lot more unhealthy than most kids, but she doesn't have a terminal illness and has no big threat for failing organs.  It could always be worse.  I always realize that at the hospital because you usually do see worse.  Sure we have doctor appointments out the wazoo and go to the hospital frequently and have many therapist, but she could have it much worse.  My long term goal for her now is for her to walk.  I think it will take another 2 years, but she loves to be mobile and I really want that for her.  She enjoys her walker the most.  She could spend all day in that.  I guess it gives her the feeling of independence.  Isn't that what we all want for our children, no matter if there's delays, health issues, or nothing wrong at all?  I'm just so blessed to have a child that is amazing and has taught me so many things!