To Pre-K or not to Pre-K...That is the Question

Today has been a day that I have been putting off for two weeks.....pretty much until the last minute.  Today I took Haley to "big girl school" as she calls it, for pre-k screening.  For those not familiar with NC's pre-k program....qualification is either a financial need or some deficit.  They do let "normal" kids without financial need or deficit in, but the ones that are affected get first choice.  We've been told that Haley is pretty much a shoe-in because she has an IEP (her yearly therapy plan and goals). But I'm so torn.

Like most parents, it will be hard to see their "baby" go to real school.  And to do it a year early is particually hard to consider.  I'm not mentally or emotionally prepared to see this happen so soon.  But its reality, I have to let go eventually.....unless I home school....yeah right!!!!  One one hand it will give her a head start into the transition from preschool, she will already be acclimated to real school once kindergarten starts, whereas most kids are crying for mommy all day for the first two weeks.  Right now, that is the only pro to pre-k that I can identify.  But I know that's wrong, I'm just being irrational right now. 

I love her preschool....LOVE, LOVE, LOVE it!!!  She has been there pretty much from the beginning of her Joubert Journey.  She has been through every classroom. From the baby room to the three year old room and if she stays, the four year old room.  Every single one of her teachers have been so good.  Heck, everyone is, they all love her!!!  They all say they will be so sad when she leaves and will be heart broken if she leaves early.  So there is that sentimental attachment for me.

But what bothers me most is that she will be thrown into a classroom with 17 other children.  Her class size now is 8, sometimes less.  I feel like she is going to be thrown into a pack of wolves when she still has so much I want her to develop before that happening.  I really worry about her speech.  That is her main source of frustration.  If she is not understood, which is often, she gets very upset.  I suppose that is ok for her....she's been misunderstood most of her life, she's sick of it!  I only imagine that the teacher will not have enough time to stop and interpret what she is saying.  I fear that if this happens, she will regress and not say anything at all at school.  I want her to have this one last year of special treatment where people know and understand her and hopefully improve her speech to where she is understood.

On a slightly less important self-centered note, I will hate the dreaded car-rider line.  Sitting with car idling 1 hour before dismissal in order to be near the front of the line.  I will inevitabily be one of those unfortunates, but give me one more year of easy drop off and pick up! It also means getting up earlier to ship her off to school, and for those who know me persoanlly know this is not a good thing for anyone.

But most of all I don't want to face the reality of the fact that she is growing up and no longer a "baby".  She will always be OUR baby, but now she insists that she is a BIG girl and I don't like it!  I feel selfish in some regards that I may be holding her back, that maybe its the right thing to do.  And it will also be a SMACK of reality when she will really be in the minority being a special needs child.  Where she is now, she is in good company with many special needs children.  It might sting a little to see that.  Or I may be pleasantly surprised when I see her with "normal" children who don't know her and accept her.  And I have to believe that will happen, otherwise I may never be able to let go because of the thought of her being bullied or pick on because she's different.

One second I think we've made our decision and the next second we've changed our minds.  We won't know IF or where she would be placed until late July.  Maybe she won't be accepted after all and this will be a moot point (cheering yay on the inside...no decision to make!).  So we have some time to think about it.  Until then....I will be agonzing about the next step in her journey to "growing up".

Miss Independent

I always knew deep down that Haley would someday walk, and would do so independently. I knew she would walk without a cumbersome walker or holding out hands. But the uncertainty of how long she would be tethered to someone or something remained a mystery……an agonizing mystery.

She began taking independent steps several months ago, but still required us to be near by to hold her hand to go any significant distance. Today she has proven that she can walk independently wherever she wants to go. We have known that for a long time, I think she just lacked the confidence that she could actually do it. Her teachers at school have been telling us how much she walks at school, but this is the first that she has done this much walking at home.

We ate dinner at my mom and dad's house tonight and she just started walking a little farther and a little farther. Then she walked down the hall to her bedroom, then to the kitchen, then back to the living room. She continued to do this for over 30 minutes. Walking. Completely. INDEPENDENTLY. For. 30. Whole. Minutes!!!!!!

Here is a short video of her showing off her independent walking. The noise she is making is her imitation of a chicken….”bok, bok, bok”. I hope you enjoy it as much as we did tonight!!!!

2 Year Stats

Haley had her 2 year pediatrician appointment earlier this week and she is growing like a WEED! I can't remember the exact numbers (I should write these things down). She weighed almost 27 lbs I beleive, which is little over the 50th percentile and she had a pretty big height growth spurt and is now in the 75th percentile. She has always been below the 50th percentile for both height and weight, sometimes closer to 25th, so she really made a big leap at this appointment.

The doctor was pleased with how she is doing and the progress she is making. He talked to me a little about potty training. And although it is still early to expect her to fully potty train, he told me to go ahead and start introducing it. He said that we should not let the fact that she doesn't speak and can not walk hold her back from at least introducing potty training. We got her a potty for her birthday, but haven't really done anything with it yet. From what I hear potty training is a pain in the butt for the parents (no pun intended) to not be in any rush, so I will just let Haley tell us when she is ready.

Not much else to report, but I did want to leave you with some new pictures. There are a ton more on the Picasa album (the link is on the right side of this page). Enjoy!

Haley on her potty

At the Build-a-Bear party

Random cuteness

Happy 2nd Birthday My Sweet Baby Girl

Two years have come and gone. There is no truer statement than "they grow up so fast". This has been especially true this year. You have been through so much this year, more than some people have to endure in a lifetime. You have shown us the true meaning of perseverance, strength, patience, faith and love. But this year has also been much more than about your "differences". We refuse to let your difference define who you are.

You are coming in to your own and changing so much everyday. You have a huge personality. You are so silly and witty, even at just 2 years old. You have the greatest sense of humor. Your laugh is the best sound on earth, and its the most unique laugh. Although you do not speak true words yet, you certainly do know how to communicate and are very good and telling us what you do and do NOT want. You can be very opinionated in your own little way. It is hard to sometimes remember that although you can't talk to us, that you understand every single thing we are saying and can comprehend its meaning.

You are generally a calm and even tempered kid, although sometimes it does not feel that way. Parenthood is difficult and sometimes our patience wears thin and we have to remind ourselves that you really are an easy baby compared to others. You enjoy playing and can entertain yourself for hours. You love animals. Your puppies and kitties are some of your best friends. Playing with baby dolls and dollhouses is also something you enjoy doing. Jewelry has also become something that fascinates you, I have to hide my rings and necklaces from you sometimes! You like to play outside and it has been a really rough Winter, we have not been able to go out much and that does not make you happy. We are going to get you a swing set for your birthday so there will always be somewhere to swing and slide and play outside! We hope to be able to teach you how to swim this Summer, you really enjoy the pool.

You have always slept well at night and for the most part still do. For a brief time when you had your first ear infections, you did not want to lay down to sleep and kept sitting up in your bed at night. You go to sleep easily around 7:30 and sleep solid through the night, that is a great blessing!!!! Naps are starting to become sporadic though and we are afraid they will soon become a thing of the past, another sign that you are growing up!

You started going to preschool earlier this year, a special school where there are others with "differences" just like you. Your teachers are very special and care very much for you. You have made lots of friends and really enjoy going to school. Some days when we pick you up, we think you would rather stay there and play with your friends than come home and take a nap. You now have all your therapies at school. You have been using a walker to get around for a couple months, but much prefer crawling...its so much faster right now. But one day you will get the hang of walking and will no longer be held back by the limitations of your walker.

You are a very smart little girl too. You are starting to learn some of your colors and shapes. You can point to several parts of your body. You are the biggest copy-cat too, and really enjoy copying everything your Daddy does. Puzzles and shape sorters have become old hat to you and not very challenging. You are very analytical at times and we can just see the little wheels in your mind at work when you are trying to figure something out. We can only imagine what is going on in your mind if it could only come out!

Eating has become a struggle lately. You are not a picky eater, but it is hard to figure out what it is that you want to eat some days. And you must be the only child in America that does not much care for peanut butter and jelly sandwiches. Some of your favorite foods are bean burritos, blueberries, waffles, tuna, and slaw. You have very strange tastes, just like your Daddy!

You are simply the most beautiful little girl we have ever our laid eyes on, and have always thought so (and we am not just saying that because we are your parents). We can't go anywhere without at least one person stopping to admire how cute you are. Your hair is so long and pretty, we have still yet to cut it, we can't bear to cut it yet. And your big brown eyes could melt the coldest heart. You are going to be a heartbreaker! Mama has been horrible, horrible, horrible about not taking enough pictures this year and she will try harder this year to take as many pictures as she can of your sweet face!

And you are so very sweet at times. For a while you were giving out kisses like they were going out of style. Kiss and hug everybody! But now you have become more conservative with them, kisses are not free anymore. You love to cuddle your stuffed animals and will hug and pat them on the back. Blowing kisses is something you are very good at and do all the time.

Physically you are growing so big too. Although you still look kind of tiny, you are deceptively heavy. Picking you up is sometimes a struggle, you are very "solid" even if you are only 27ish pounds. You still have the tiniest feet, only wearing a size 4, when most kids your age are in at least a 6 or 7. You are starting to wear some size 24 month clothes, but mostly still fit in most size 18 month. Packing up the clothes you have grown out of is something that is hard for Mama to do, it reminds her of how tiny you used to be. You came in to this world at 7 pounds and now you are 20 pounds heavier, it is hard to believe!

It seems like just a blink of an eye ago that you were born, when we first met you and our lives as we knew it changed forever. That was the best day of our lives! You are such a joy and a blessing, and we love you so very much.

Love,

Your MaMa and DaDa

My How Far She Has Come!

Wow, I am a really bad bloggy mama!!! It has been since Christmas since I have written an actual update. The last one wasn't much of a blog, so that doesn't count. I have been very very busy with Jog for Joubert and with running in general, add that with working, and chasing a toddler and things like blogging get pushed to the wayside.

At any rate, we had our 6 month review with Haley's case worker with the Early Intervention program yesterday. We just went over her goals to see what goals she has met and make up new goals for the next 6 months. It has been almost 1 year to the date that we first got involved with the Early Intervention program and little over a year since we started therapy. Sitting down with her case worker and going through her old goals really shocked me to realize how much progress she has made since this time last year. I mean, its not like I didn't think she was progressing, but to look back at where she was and compare it to where she is now, it was breath taking!!!!

This time last year Haley could not even hold on to our hands with enough strength for us to pull her up from a laying to sitting position. Let me repeat......could not even hold our hands so that we could pull her up!!!! At almost 1 year old, she could not roll, change positions, crawl, stand....she pretty much just sat (or laid) where ever you put her. Today she is crawling all over the place, rolls like a mad-woman, can get her self in to pretty much any position she wants, has almost perfected pulling up to standing by herself, walks with the assistance of a walker, and PT has even reported a few independent steps....although I have not witnessed this with my own eyes. There used to be days where I wondered if we would ever see the day that she rolled over, now she is on the verge of walking. It is amazing!!!! Her fine motor skills are just awesome, maybe even a little advanced for her age. Talking, now that is still very delayed. I have yet to hear her say a real word. One of her therapists, Miss Alicia, tells me week after week about all the words she says. I don't doubt this for one second, she just hasn't said anything for us. Haley really likes Miss Alicia, so maybe she is more talkative for her. (and if you are reading this Alicia....you're the BEST, you rock!!!!!) Also I think that I expect to hear words pronounced correctly instead of baby jabber. I have yet to receive my baby language decoder ring in the mail, so maybe once that arrives, I will be better able to understand "Haley Language" LOL!!!! I'm sure language recognition in first time parents is often the reason we think there is a speech delay, we just don't get it. Her sensory processing issues have improved a lot also. Last year, you could barely touch her arm and she would recoil.....that is called tactile defensiveness. She also had a lot of trouble with motion changes and fear of falling. Both of those are much better, but she still does have trouble with certain textures....HATES (almost terrified) of stickers, which is unfortunate because a friend sent us something for a sticker club, now we have tons of stickers and can't use them.....YET!!! She also is not a fan of Play-Doh. But these are all things that we are working on.

On a very silly note, Haley is a total copy cat and will mimic most anything we do.....so we thought it would be funny to teach her to do a "fist bump"....you know just in case she meets Barack Obama she can greet him appropriately. (LOL that one was for you Daddy). Its her new favorite thing to do.

I can't remember what all of our new goals entail. A lot of focus will be put on speech and language. Of course, gross motor wise, walking is our goal. And with cognitive and fine motor skills we are going to be working on typical things other youngsters her age are doing....shapes, colors, etc.

I still have my days where the amount of work that goes into having a special needs child is almost overwhelming, lots of days where I moan and groan "why us" and almost mourning over the "normal" child we expected. It is often hard for me to be around my friends with "normal" children Haley's age....seeing what she "should" be doing. And it is almost maddening when people tell me maybe it is a blessing that Haley is delayed.....at least I don't have to chase her around everywhere. I have come to realize people say this because they don't know what to say, they mean well, but really????? I imagine there will be things like this we will have to endure and deal with for a long time. Although life took a different path than we anticipated, we do not regret anything, nor would we change it. It is what it is.

I'm so sorry I don't have any pictures to post right now. Along with blog neglect, I should be charged with failure to take enough pictures. How many years of blogger jail time does that get me??? This time last year my obsession was photography....couldn't get enough of it, my family and friends were literally sick of hearing about it. Now (20lbs lighter I might add!!!!) my obsession is running, but I promise, I will get some pictures up ASAP!!!!

Speaking of running, please visit my Jog for Joubert Syndrome blog and support my cause. There is information about J4JS on the right side of the blog and several links you may want to visit. I am hosting a raffle for a "runner's gift basket" on that blog sometime soon, even if you are not a runner, there are some great goodies in there for everyone. Thanks!!!!!

Almost Crawling

Grandma got a short video clip with her phone of Haley tonight almost crawling. She is so close!!!!

Another First.........

They seem to be coming more and more frequently lately. I think something is really starting to click with Haley. She is enjoying her increased movement and freedom. Today when she woke up from her nap, Grandma found her in her bed sitting up. Up until now, Haley has been unable to transition from one position to another. If you sit her down, she sits, if you lay her down, she lays. She has never been able to go from one position to another. So, much to our surprise, she was found sitting up playing in her bed without anyone helping her do so. Grandma left her that way for a little while because she was happy playing by herself, but when she went back to get her.....there she lay on her belly and was happy. And when she went back again....well you guessed it she was sitting up again. So it seems like its not a fluke thing, she really has figured out that she can control her own positioning. I can't wait to see her do it with my own eyes!!!

Also, against the advice of our PT, we went ahead and bought her a "toy" walker because we have hit a snag with insurance getting her real walker ordered (imagine that!!!!), and the loaner walker is kinda old and the wheels don't work right. She seemed to enjoy the one my mom and dad for her, and I feel like it helps her get a grasp of how she can make herself move without the help of others.....even if it is on wheels. So here is a short video of her running across their living room chasing the chihuahuas (if you look closely, she has their leash in her hand, I think she wanted to capture them). This was taken with a cell phone, so the quality is very bad, but you get the idea.

Little Miss Muffet.....

Look who is starting to sit up on her own!!! She is still a little wobbly, but she can sit without help anywhere from a few seconds to almost a minute or two.

She is also starting to scoot a little bit while she's on her belly. Not enough to really get anywhere, more or less in a semi circle, but hey, its a start. Haley has been pretty cranky this morning and I think I figured out why. There is a little white spot on her bottom gumline, and when I felt it it was hard like a tooth ready to pop out!!!! She is also trying to talk to the cats and Rhett. The cats don't pay her much attention, but Rhett seems to be interested in what she has to say. He will come over and lick her hands or sniff her head and she just squeals. Its too cute!!!

I'm 6 months old!!!!

Can you believe it.....1/2 a year old already. Where did the time go??? Haley has discovered the fun of blowing bubbles and is constantly doing it along with her usual babbling and sqeauling. We have also been experimenting with a few different foods. So far we have tried peaches, sweet potatoes and bananas. She likes everything so but makes some funny faces when she eats peaches. Haley's Godparents, Brad and Lisa are coming from DC to visit for Labor Day weekend. They have a 2 month old little boy named Gannon. Haley is very excited to meet him. I will post some pics later of our holiday weekend.

Changing everyday!!!

It seems like Haley is doing something new everyday. She has rolled....purposefully....from her belly to her back several times since the last blog. She seems so pleased with her self since she has figured out how to do that!!! Haley has also discovered her feet, she especially likes to play with them during diaper changes. I imagine it won't be long until those feet are in her mouth. She is also becoming more and more content and I am getting better at predicting her "bad" times of day and how to deal with it. Although I'm sure just as soon as I master that skill she will change up her moods on me, kids always keep you on your toes right??? She really is becoming a "happy" baby. She smiles and laughs all the time, and is learning to have squealing conversations. I keep trying to catch these on video, but as soon as the camera comes out she is suddenly not in the mood to talk. She is also starting to figure out that she can grab (and promptly put into her mouth) all those pretty toys that I keep surrounding her with. I'm going to try to get some good pictures of her tomorrow, I will post them as soon as I can.

Fun at the Vet and Rolling Over

We had a pretty eventful day today. We made another trip to the vet with BOTH of the cats. I had my hands full! I carried Haley in the Bjorn carrier and the cats in their carriers, one in each hand....it was a sight!!!! Baxter, the smaller cat, has really taken to Haley and is very curious about her. He was pretty upset today at the vet and when they took him out of the cage, he headed straight for Haley and snuggled up next to her. His sister would protect him!!!!

In other news, we had an "almost" roll today. Well, not so much of a roll, but just gravity pulling her big ol noggin to the floor. I had her on her belly up on her elbows really good and next thing i know....thump, her head is on the floor and she is on her back screaming. Poor baby!!!! No worries, she recovered in about 2.3 seconds. So, we have our first official roll....whether or not it was her doing or just the force of gravity....we will never know!!!

We Have Moved....

to a new site that is. We quickly out grew the old site. Hopefully this site will allow me to post more pictures and video, I'm leaving the old site up just to keep track of growth and milestones, but I will be actively blogging here. You can still access the picture sites through this website, just look under the picture heading on the left side of the screen. Haley is doing great, she is babbling her little head off and just about to roll over. She hates being on her tummy so she doesn't have much incentive to want to roll onto her belly. We have been swimming a few times and we started feeding her cereal. As soon as I figure out how to add video to this site, I have some cute video of her "trying" to eat....more like laughing at us while trying to feed her.

Happy (late) Father's Day

Haley wanted me to tell all the daddies out there "Happy Fathers Day!!!!" We had a good day yesterday. This was, of course, Will's first Fathers Day. He got cards from everyone, even the furbabies!!! Haley gave him a new golf club (like he needs more of those!) and a little "new dad" figurine. We spent the afternoon by the pool with the grandpas. There are a couple of pictures up on the photosites of our afternoon. Haley is getting bigger and bigger. I would guess that she is around 13-14 pounds. She is starting to roll up onto her side, but hasnt quite made it all the way over. She is starting to take notice of her toys and play with them a little bit. But boy does she have a temper!!!! If she doen't get her way right away, she will let you know about it. In general, she is a happy baby though, just don't cross her!!!! We go back to the doctor in a few weeks for more shots and a check up. I really dread those shots!!!!

Nighttime Bliss

Haley has passed a very important milestone....sleeping through the night!!!! She has done fabulous since we moved her into her room. The other night, she slept for a total of 10 hours, I couldn't believe it. She has also discovered her thumbs. It is so funny, she'll be chewing on her thumb and then she'll move her arm and the thumb comes out of her mouth and she gets so mad at herself, like "where'd my thumb go, who took it??!!!" but then in a few seconds she will find it again. I'm sure I won't find this so cute when she is 10 years old and still sucking her thumb (hmmm, does that remind me of someone I know??? ) but for now it is cute!!!

Look What I Can Do

Haley is getting so big!!! She is starting to hold her head up on her own. She is also much more alert and interactive. She likes to look at her mobiles and do tummy time on the activity mat. Pretty soon she will be rolling over. She is about to pass another important milestone, sleeping through the night. She has always been pretty good at night, only waking up once to eat and get her diaper changed. For the last two nights she has skipped the 3am feeding. I'm keeping my fingers crossed that she will keep up the good work.