Ms. Independence

She seems like she's grown up over night. All the anticipation of when she was going to start walking and talking and now that part is over. Before you know it, she'll be wanting us to drop her off a block away from school so we won't embarrass her in front of her friends. She's a little lady now and quickly acclimating to big girl life. She got her first Starbucks last week. Wish I would have pulled the camera out for that! She had a kids vanilla milk with our neighbor, Audrey, her mom and I. I know she felt pretty cool to be having Starbucks with the big people ;)

The time just seems to fly by! We are considering converting her crib in to a big girl bed. She keeps getting her leg caught in between the slats. She keeps protesting her naps and hasn't really taken a nap all week. I am not ready for my little darling to grow up. I guess that's just how it is with the baby of the family.

SHE WALKS!!!

Though she actually took her first solo steps, two to be exact, on
February 12th. I promised I would not blog about it until she stood in
the middle of the floor unassisted and took three steps, so we could
techically consider it "walking". Yay Kaylee! You're on your way!

Ethan's Birthday Pics

Ethan had a nice family birthday party.  Since he is a little on the shy side, we opted to do favor boxes for his class, have a family party and do Legoland with Mommy on Wednesday next week, in lieu of a big party.  We had a pajama party with "breakfast for dinner", Ethan's favorite meal of the day.  Grandma came to visit from LA and our neighbors, Audrey and Burke stopped by for some cake.

I managed to find Mario Bros jammies at Target yesterday morning.  What a find!!  I thought, maybe I'll see if they have some Mario pj's while I was there getting bday wrapping paper and to my surprise they had them in his size!  The other surprising find...they had a Sonic the Hedgehog tshirt for Javi!  My mom had already purchased some Wii pj's for Mark (you can see them in the pic of Ethan opening his presents) for Christmas, so all the boys had their gaming jammies on ;)  Cute!

We had biscuits and gravy, hash browns, eggs, and bacon.  The adults had mimosas too, with the left over champagne from New Years.  Cake for desert, of course!  I'm still stuffed from all the carbs.  

Ethan received all gaming presents, of course!  His favorite past time!  Thanks everyone!

Thanks for all the cake tips, Sharon.  Couldn't have done it with out your wealth of cake knowledge!

Where did the time go?

Tomorrow my little boy turns FOUR!! I can't believe it!! Where did the time go?? I'll show you...

You were the most beautiful newborn.  You looked like a porcelain doll 

and Daddy was afraid he would break you.

 It wasn't long before you wanted do everything just like daddy...

But it was no secret that you were and still are Mama's boy...

Those eyes could melt anyone's heart...

They are like windows to your soul...kind, sensitive, and good natured.

Your smile shows your more devious side.

Yes, my little angel does have a devious side from time to time.

I remember your first time on the soccer field.  

It was the first time I realized that you were not a baby anymore.  

Now you are my big boy turning FOUR!!!

HAPPY BIRTHDAY, ETHAN!!

Kaylee's New Words

Kaylee said two new words today!!

We were at my friend Carrie's house today and Kaylee pointed to her dog Betty and said "Ook, DOG!" and pointed to the dog!!

Tonight, we were folding laundry and she said "OCK" for sock!!

So happy that she is now consistently using the signs EAT when she is hungry too. Thanks to Signing Times!

Quick Kaylee Update

Kaylee has been doing marvelously over the past few days since being released from the hospital. No seizures or spasms that we have witnessed and she seems to be getting used to her new high dose of Topamax. She had a rough first few days, it made her wakeful and a little irritable, but at the same time a little lethargic. Think it was the lack of sleep! I was also out of town, which didn't make things any easier on her, poor baby!!

Yesterday, she stood up for the first time, totally unassisted!!!! Hooray! Wish I was quick enough to get a shot of it with the camera. We are one step closer to walking!!

Soon she'll be chasing after her boyfriend!

Ok, gotta run to PT. Can't wait to share the exciting news with them!

G5 Progress Report

Just wanted to give a brief update on how we are doing three weeks in to our new school/therapy year.

Kaylee has in-home early intervention therapy on Monday's and Thursday's. They work on pre-language, play skills and also reinforces the homework we receive at our OT and PT apppointments. She has Physical Therapy on Tuesday's. They work on strengthening her entire body since she has low tone through out her body. She has Occupational Therapy on Friday's. They work on her fine motor, mostly visual motor, such as feeding and putting toys in and out of buckets and such. 

Our schedule is pretty full, but we do get a break on Wednesday's which works out well. It's right in the middle of the week, so we can do girl things like shopping and playing. We have floor time to reinforce all the things that we have worked on in therapy for at least an hour a day. Many of the things Kaylee works on in therapy, she does on her own. She is a very motivated little girl.

Ethan is doing great! He is really doing well in his new inclusion program. He is in a class of 14 students, including him. There are four girls and ten boys. Ethan knows all the names of his classmates and even made a book about them. Ethan is learning to write his name. He is great at spelling it, we are still working on the correct formation of the letters, but he is really making progress. He has really come along with gripping crayons and pencils and he loves to do art in class. I met with Ms. Danielle last week for a conference and she said she just loves him and he is a pleasure to have in class. Ethan does need a little extra time to process language, so she gives him an opportunity to come to his own conclusions about things, which is a great reinforcement when we begin RDI for the boys.

Ethan is learning phonics at home and is doing quite well. We work on phonics about three times a week and we work on writing almost every day. He and Daddy color together almost every day too. Last night they watched "The Upside Down Show" on Noggin and did "Action Fingers" just like Shane and David. It was pretty cute.

Javi is doing awesome in his new program. We had a rocky start and we were really unsure of placement at first, but he is working things out. He is really getting adjusted to his new routine. He really has a busy schedule at school. He does a lot of work independently and is expected to do many tasks unprompted. He gets off the bus on his own and goes directly to the playground, then lines up with his mainstream class. He does inclusion in the morning for the first 15-20 minutes of school, which means he gets to go to a mainstream third grade class. Then he goes to his NSH class where they have a very busy schedule with a mix of different activities. He plays and eats lunch with kids in his mainstream class. He also does art rotation and will soon do computer and library time with the mainstream classes. 

I was exhausted just hearing about the schedule at Back to School Night, so I can only imagine how he feels doing it. He comes home in a good mood every day, so I take it he is enjoying it. He has made some new friends too, so we are happy everything is working out so well for him now.

We had a sleep over with Noah this weekend, where Javi got ready for bed with out any prompting at all. He went and got his PJ's, kid pull up, and brushed his teeth with out any verbal cues. Typically, Javi will try to get ready on his own, but will typically need refocusing, such as a reminder of where his PJ's are, brushing teeth or where to find his "underjams". Yesterday, he also worked through his homework independently with very little help.  

Javi has behavior modification on Wednesday evenings. This is really therapy for me, since she mostly works with me, making suggestions and tracking progress.  We met with our new behavior specialist last week, and she was great.  We really did not work well with our last consultant, so we are happy to have some fresh ideas with our new consultant.

We are very proud of all the kids and all the progress they have made.  It's really amazing to see them adjusting so well to so many changes.  Mom and Dad are still having trouble adjusting to such a full schedule!!

Kaylee Signs

We have really been working on the signing.  So far we have two signs down.  We just started, so that is not too bad.  She does these two on voice command only.  We have been using Signing Times. We still don't have many words yet, in fact she is only making the "ma ma", "da da", "ooo" and "hmm" sounds for the most part. We get an occasional "ga ga" and "ba ba". She seems to be saying ma ma and da da discriminately, since she says it when ever she sees either of us. We are hoping that with the use of the signing, it will reinforce the speech.

Kids' First Day

Kaylee had a great work out at PT. Ms. Bonnie gave us the results of her eval. She was in the 16th percentile for stationary play skills (sitting, kneeling, rotating her trunk, etc) which translates to a typical 9 month old skill level. She was in the 5th percentile for mobility which translates to a 7 month old skill level. Nothing all that surprising.

She was happy that she had made progress since we last saw her. She wants to keep an eye on the position of her feet when she walks to see if she needs orthopedics. She wants to wait until she is walking to really make a judgement call. We have some exercises to work on until we see her next week. Kaylee did very well for her first day, and it was during her regular nap time!! I am so proud of her. She only got a 30 minute power nap before our appointment, so she did really well considering her naps are usually two hours.

Kaylee also hit another milestone today! She clapped for the very first time.

Ethan had a great day. In his teacher, Ms. Danielle's words "Ethan had a FANTASTIC day!! He did so well. He had no trouble adjusting to the new class, new friends and new routine. I just LOVE him and I am so happy he is in my class!!" If that doesn't make a mother feel good, I don't know what would!! Guess I'm doing something right. Ok, so Ethan gets most of the credit. He is just naturally a wonderful little boy.

Javi had a great day too. There were some complications with his drop off and pick up, since the traffic at Javi's school is a complete nightmare. There is only one way in and out of the neighborhood where his school is. To complicate the traffic even more, his school is on the top of a really steep hill, so most people drive their kids to and from school. They actually have a 10 page hand book for pedestrian and auto traffic, complete with different maps and procedures for the morning and afternoon. All I could think of was Mr. Mom! You are doing it wrong!! It's north to drop off, south to pick up a-hole!!! I actually walked the wrong way too, although I had another mom say, ah you are doing fine for the first day :) I ended up parking my car three blocks from the school and walking in because the pick up loop wasn't moving. I had to drag the sleepy little ones out of the car and huff it in. It took me a total of 45 minutes to pick him up from school. I think it may be easier for him to take the bus! Fortunately, we are eligible for the bus, since it's about two miles from our house.

Javi said "It was such a long day, Mom." He was pretty hungry after school, so we decided to call Nana to meet us at Jack In the Box for a snack. It was Javi's cousin, Analia's first day of preschool, so she came along too. We wanted to celebrate their success today with a little treat. She and Ethan had a good time playing together while we were there. They are so cute together. He says Analia is his girlfriend. Well, they aren't blood related, so that's ok ;) She is from Javi's dad's side of the family.

It was a good day over all for everyone. I am happy that we had a smooth transition in to our new programs :)

Posted a couple new flickr pics too.

Neuro logic?

Today's appointment was frustrating to say the least. We walked in to a very busy waiting room, so we knew that we were in for a rushed appointment, which is the last thing you want when you wait almost two months for an appointment.

We were seen in a timely fashion, as usual and our doctor was very pleasant as usual. He is a nice doc and has an excellent bedside manner, however, on this particular appointment, I have to question his logic.

I reported that Kaylee has been making some strange new movements, but we haven't seen her make the exact same movements each time that we have noticed. They are similar. She gets a blank stare on her face then kind of holds her hands up. She does this about 4-5 times a month, so it's not all that often. However, she is on Topamax.

We also reported that we were unsure whether or not she was having seizures at night, since she hasn't sleep in our room in months.

We reported her results of her OT and PT evals and the EI's reports. She is currentlyfunctioning at about an 8-9 month level overall. She is going on 13 months now.

He basically told us that because she was making progress he wasn't concerned. I asked why he wasn't concerned, since as of our last appointment she was only about a month or two behind. He said that since cognitively she seemed on track, that he wasn't concerned with the fine and gross motor being off.

He also seemed very fixated on the diagnosis of TSC, even though I had brought up that she doesn't show any other symptoms of TSC. Our family shows some symptoms, but nothing conclusive. She has completed the genetic testing which was also inconclusive.

I challege the diagnosis because I just don't get a strong gut feeling that it's right. My gut has been right so far, so I tend to listen to it.

I am concerned about a 13 month old baby that just began crawling two weeks ago. Kay is not standing on her own or walking. I know that the walking deadline is 18 months, but I'm not going to burry my head in the sand until then. Sorry, I made the mistake of listening to a
doctor tell me my baby was ok once already and Javi turned out to have Autism. Fortunately, Kay already receives a lot of services that Javi missed out on with out a diagnosis, but that is exactly my point, how far behind would she be without them? Would he be more interested in
getting to the root of the problem then?

We are in the works for a repeat vEEG, but I pretty much had to push for a repeat. He increased her meds for the time being.

I know that it may not change the treatment plan, but something tells me something is a miss. I think it's time for a second opinion.

Shanna Grimes
(Sent from my iPhone)

More Milestones

Kay is starting to say "mama" started on Friday. She's now pulling up
to a standing position, started on Sunday. She's also getting pretty
fast with that army crawl, despite the fact that she drags her left
side. She's just starting to cruise. She can walk a step or two
holding her toy box.

Ethan is now talking non stop. From the shy boy who never left my side
to every 2 seconds he has something else to say. He sings all the time
too. Today when we took an evening walk around the neighborhood with
daddy, I had to tell him twice to say excuse me and be quiet while
daddy and talked.

Good news all around!

Train off the Track

For months we've been chugging along thinking everything was ok with Kaylee. We sat down with the therapist today to track and measure Kaylee's progress in comparison to typical babies and it turns out that her gross motor is at about an 8-9 month level. Cognitive and Fine Motor are on target, but Gross is off. It seems like the gap is getting larger too. Before she was only a month or two behind, now it's three, almost four. I have been a little concerned with her lack of crawling. Kay's first birthday is just three weeks away, and even Javi (autism), our slowest to develop with everything has Kay beat with the crawling. I know that crawling is not considered for development, but almost everything she does is still wobbly, like a 6-9 month old baby would be. I called Dr. Neuro to make an appointment to see what he has to say about it. The therapist is concerned about her low tone. She is concerned that the reason she isn't crawling, cruising or walking is because of low tone. So though we had felt that she has made so much progress, it turns out that our developmental choo choo has been derailed. She has made progress, but only really in Fine and Cognitive in the last couple months.

I am a disappointed to think that we may have to go through another round of testing and hospital stays to determine if there is another underlying problem. I know that we are not alone there, since a couple of you that follow this blog are also going through testing right now. It just seems like if it's not one thing, it's another. I feel like it's a constant balancing act with the kids. It's like, ok, Javi's doing ok this week, now Ethan is having trouble with this, now Kay is having this issue, now back to Javi. If it were normal everyday issues, fine, but these are big ones. Such as Javi's issues with focus, concentration, flapping and his ever increasing needs for sensory input. He keeps hurting the other kids because he tries to give them "sensory time". Ethan's issues with his gross motor, last week it seemed like he fell down every 10 steps he took. Now Kaylee, who I thought was doing much better. I know that's life, this is the hand we were dealt and we are doing our best to play it and appreciate what we have but, sometimes it's just overwhelming. We'll have to hang in there and see what they say when we see Dr. Neuro in August.

My big boy!

Ethan took his very first ride on a school bus today. He was such a
big boy. He walked right on, picked his own seat, helped buckle his
seat belt and said "Bye Mom!". No reservations at all. He's only
three! Such a big boy, not a baby any more. I know he must feel cool,
just like his big brother.

Mommy's Big Girl

Kaylee is growing up so fast. I decided to try giving her soy formula
in a big girl cup to see if she'd like it, and thankfully, she did!
Thought I was going to have to pump all day long today to supplement
her tomorrow. Javi has a field trip to the park tomorrow and I am one
of the drivers. We have respite care lined up for Kaylee tomorrow. I
hope she will be a good girl for her. I will be gone from around
9am-2pm, that will be the longest I have ever been away from Kaylee.
She always does fine, but I always get nervous when I can't be with
her. I know they are fully trained, but that's my baby girl. I think
its pretty natural for a mommy to feel that way. I feel like its
important to give Javi that one on one time.

IEP Season

I have been IEP'n it up having two boy on the spectrum. It's
transition time for both of them. Javi is going in to NSH (non
severely handicaped) and Ethan in to Integrated Preschool (50% typical
kids with less adult to child ratio). This is a big step up for both
of them, in terms of independence. They will both be at a new school
with new classmates and new teachers, so it's a pretty big change.

Yesterday we had Ethan's transition and today is the continuation of
Javi's transition meeting. Hope all goes well!

Shanna Grimes
(Sent from my iPhone)

Happy Anniversary, Mark!

 

More Milestones for Kay

Today she got up into the crawler position and held it for about two minutes. She did the "bouncy bootie" thing, but didn't actually crawl anywhere. It's only a matter of time. I will have to have my camera ready at all times. I am actually hoping she waits until we get back from Bend. One, so daddy can see her and two because their house isn't child proof and they have two kitties that each outweigh Kaylee by 10 lbs! They are huge! I picked one up on my last visit and nearly hurt my back. At the time they both outweighed Ethan at age 2!

I am hoping that she will not have any issues walking. She is very bow legged and she has a genetic abnormality called "curling". Her toes curl sideways, almost looks like a few of her toes and pinky are broken. She tends to "monkey toe" everything (grip things with her toes), which is even easier for her to do with the curled toes. The doctor said that over time, the joints may straighten out a little and we could always get her ortho shoes. Ethan and Mark also have them, but her joints are the most curled. She will probably never be a hand model or a pianist, but it doesn't hurt her and she manages fine.

I'm a big girl now!!

I stand up and play with my leap table. Today I even stood without
holding on to anything. Then I noticed that I was standing and had to
grab on to something. I am starting to pull up to a standing position,
but I'm not quite there yet. Mommy is so proud of me. Soon I will be
chasing my brothers around the house.

Milestones for Kay

Seeing a post from Danielle about Trev's milestone made me think to post about Kay.

Kaylee started giving high fives yesterday. She also started standing and balancing holding on to something. We have to prop her up, but she will hold on and stand there for a few minutes. She also managed to stay in a crawler position when I stuck her on the floor on Friday. It seems like she is becoming a little girl over night. She's getting so big. I can't believe the time has gone by so fast!! Sometimes I just want to hit the reset button, of course we could do with out the seizures, hospital visits and ACTH. The one good thing about all of it is we have met some really nice people that we would probably never would have met otherwise. Everything happens for a reason, I guess :)