We Have A Date

I received a call from jailynn's service coordinator today. The school system gave us a date for Jailynns IEP meeting. It will be Friday May 1st. Her coordinator really pushed for a friday because she knows I do not have school myself on fridays! That was so thoughtful of her. I would have ditched school for this anyway though, had it been scheduled any other day. They did not tell her what time though. She is trying to influence them to make it as early as possible or later after lunch time because we want to have Jailynn there.
Good thing is that i know the cut off for summer services is birthdays before June 1st. Well Miss jailynn makes the cutoff by 1 day! So they will have to give her Summer services if she qualifies, which we know she will.

I am excited and nervous at the same time. I am trying to go in with an open mind but I just have bad feelings about the IEP process because of horror stories plus Baltimore City Schools system is so nuts. The city schools are bad and there is so much bad stuff going on and so many dangerous parts of Baltimore City. I really wish we could move or get permission to jump into County schools, but that is just a dream.

Zoo PIcs!

Here are some pics of Jailynns first trip to the zoo. Too bad not too many animals were out yet due to the weather and the zoo construction. She had a good time and the weather was nice. We will go back again! My bestfriend and my godson went with us.

Mommy's taking me to the zoo

As soon as Jailynn wakes her little butt up from her nap we are leaving to get something to eat and then heading to the zoo. My best friend Summer and her son Aiden should be here soon and we are going together. I am not sure how much jailynn will like or pay attention to the animals. The weather is nice though and Jailynn will like being outside and getting to walk around like a big girl. I am still taking the stroller though so she can have breaks. Definately bringing my camera. Im excited to see how she reacts to it.

Jailynn is missing her daddy though, he is in Alabama for an injured veterans sports camp for the weekend. Today she was walking around for a few minutes saying Daddy Daddy daddy in a sad/pouty voice. I am going to keep us having fun so the weekend will go by quicker.


Jailynn had Pt this morning with her Kristy, our longest lasting therapist, she has been with jailynn since 3 months old I think. Jailynn loves her but lately she issnt too happy with Kristy. Kristy makes her work hard and knows all Jailynns tricks. Jailynn cries almost the entire session now. She cries with other therapists too, but PT is the hardest and Jailynn is so stubborn. She is good at turing the tears on and off now too.

attention span

Jailynns new Ot from Kennedy, Mary and I have been talking alot about jailynns attention span. It it very short. Mostly under a minute for most things. SHe can blow through a therapists bag of toys in 10 mins. She is very flighty when it comes to toys and activities. She gives up very easily and does not always visually attend to what she is doing which lowers her success rate. The therapist along with myself arre going to work very hard to help her get better with this problem. It will be a bigger issue when it is time for school. We need her to be able to focus and attend to a teacher. I have decided that I want her in a special education at least for her first year of school, which will start this fall at the age of 3. Eventually I want her in a mixed class environment but I think especially for the first year she needs more one on one interaction. I do not want her to be lost in the shuffle of daily class activities. Jailynn is happy if you just leave her be when she does not want to do something. I do not want her to be in a classroom where the teacher just lets her be because she is content and quiet. I want her to be appropriately challenged and I want her to learn and develop. I also think she needs to be in a smaller classroom where she will be stimualted but not overstimulated.

I am still waiting to hear about her IEP meeting date. I just hope we can get what is truely best for her.

Anyone have pointers, tips, experience with similar attention span issues????

28 days

today is 28 days since our last S word! Im am hopeful and happy. I can really tell the difference in alertness pre and post surgery. Also she way more cuddly.

She started using new sippy cups yesterday. Munchkin cups with latex straws. She is strating to lern to hold them correctly with 1 hand.
She is starting to be plagued with dreaded seasonal allergies again. Porr girl but I am picking up her prescription meds for that tomorrow.

short

* and my big news of the day!* jailynn learned how to drink from a straw today! I feel so blessed! she is just doing so much it amazes me. She drank some of my cherry limeade at Fridays.

Proud!

I talked to Jailynns corrdinator and Jailynns "packet" was hand delivered to the school system on Tuesday. So we are waiting for a date for our meeting. The coordinator said she is going to harrass them to schedule a date before they go on spring break. Even if the date is after spring break ( i know it will be) she wants them to "put us on the bboks" before take a break so tthat we are not forgotten.


It was all sunny and pretty this morning. I walked Jailynn around the backyard and then it just had to start raining. I want to take her to the park this weekend everyday if we can. I need it not to rain. I bearly watch the news so I have no clue.

today when jailynn's OT was almost done I sneaked onto the stairs to try to listen/observe the last few mins. I heard the therapist count 1,2,3 and I heard jailynn say 3! at dinner I was telling Jason about it and I said 1, then jailynn siad 2! I said 3 and she said 4! Then i said 5 loudly and I was going to stop there but she said 6! It was so COOL! I didnt know she could do this!

Then I tried later to get her to do it for my MIL and she did say 2 and three so I tried the ABC's because the other day I got her to repeat after me a-e. Well today I said A and she said B and C! She is a secret little genious! She is shocking me everyday! I love it!

21 days

Today is 21 days seizure free for Jailynn. If she makes it to tomorrow it will be the longest that she has ever been seizure free. Please pray for her.
Today was Jailynn's follow-up with her neurosurgeon. Her neurologist popped in too and the surgeons P.A. too. They were all so impressed with how great Jailynn is doing. The surgeon clipped off a scab that was left that was just hanging by a thread.He distracted her with goldfish crackers. He wants to see her in 2 months. Her neurologist said he wants to see her in July when they do the hemispherectomy conference appointments, so we can cancel the appointment we made for August. He said in July he will talk to us about weaning her off Dilantin.

I got Jailynn to repeat the letters of the alaphabet after me up to the letter E. She did good and I got her to do it like 5 times today.

Oh and we got her to keep her glasses on most of the day.

some pictures

here are a few recent pics of Jailynn and I threw one in of me and my best friend from Thursday night cause I liked it, Shes the edhead, I'm the brunette. The teddybear is the Spinoza Bear that was given to her

Oh and i taught Jailynn to say "I'm a mess" she says "im mess" its so cute, i can't get it recoreded because once she sees a camera she just smiles and stares/

My drama queen

Jailynn is sucha little drama queen. today she acted like her PT was killing her. She has had this same PT since she was 3-4 months old. The PT Kristy knows her well and I know she was not really hurting her. As soon as she would try to get jailynn to do something she didn't want to do Jailynn would go nuts. Then the very second it stopped Jailynn would instantly be fine. she can just turn the crying on and off like flipping a switch. Today it was stairs and standing with one foot on the therapists leg that she didn't want to do.

She is still imitating speech like crazy and holding onto more words. Just a minute ago Jason changed her and sat her on her bedroom floor so he could go use the bathroom and she looked up at him and said bye bye daddy. Its great she is starting to use some 3 word comibinations. she will usually on do 2 word combinations. Yesterday and the day before i got her to repeat her name and love. I can't wait until she says I love you or something similar. She has been identifying objects and pointing too. I am such a proud mom.

She has also been taking phones 9house and cell) and sitting them down next to her so she can dial and she can.

New Carseat

we ordered jailynn a new carseat online. Its a car seat that can be converted to a booster. It will last up to 100 pounds.It came today but 2 came! I have to drive to a UPS store to ship back the extra one. UGh!

Jailynn has decided to boycott naps! The past 2-3 days she has been babbling in her crib instead of going to sleep. finally you will her her quiet for maybe 30 mins or so and then you will hear her awake. Funny thing is that she is in a good mood even with the shortened naps. She used to take 2-4 hour long naps.

While daddy really needs her to take a nap and naps are good for her body. I am kind of glad they are shorter. I would like her to nap atleast an hour. The shortened naps along with her good moods are making me think the seizure activity, the constant storm she had in her brain before may be gone. I think since her body is not having to fight that she has more energy. It is such a big difference.

She is imitating more and more. We are so proud of her.

We had here phone conference with the school system. It was all of 2 minutes long. Now we have to wait to get an IEP meeting date.

start to IEP journey

Tomorrow is the first step in our road to an IEP. Jailynn tunrs 3 May 31st and will be booted from the Infant and Toddlers program. Tomorrow morning is our phone conference call with the Baltimore City School System. From what I was told the phone thing is not much and after that they will send us a letter with a date for our real IEP meeting.
Im also trying to figure out how we can fit other things in with all this darn therapy Jailynn will be getting.

hurry spring we are ready!

the warm weather! Its an antidepressent. I swear .I have been way happier than normal the past 3 days. Im am so sad for it to get cold again. I havent watched the news for 3 days but i know its March and not really spring yet. Today jailynn woke up in a fantastic mood too. She ate a ton at Friendlys for breakfast then we went to Party City and she didnt get cranky or cry the whole time. Normally shopping after breakfast is a no go with her. She really dislikes shopping all together, she hates it when the cart stops, it must move forward with no interuptions to keep her happy. Whcih really makes it hard to shop, which is why I normally grocery shop by myself.
Later we let jailynn walk around in the back yard and swing on her swing set. I really meant to take the dogs for a good walk but i didn't now I feel bad.
Our friends Rick and Kristy invited us over. We never really get to hang out with them much. Their daughter is a few months younger than Jailynn. We had tacos for dinner at their house. I brought mini cupcakes for dessert. Jailynn had a good time walking aorund and smiling and blowing kisses. Their daughter Izzie cried when it was time for jailynn to leave. We told her she could come to our house soon and slide on the slide and swing on the swingset. She was pleased with that.

so much therapy so little time

Yesterday a new therapist came to our house to see Jailynn. She is from Kennedy Kreiger. Her name is Mary and she is an OT she wants to come two times a week. She seems nice and very knowledgable. her only days are Tuesday and Thursday. so it looks like jailynn will be getting OT two times on Tuesday because her other OT from the early intervention program comes tuesdays and she may be increasing to twice a week too.

Today I finally got a call back from the Early intervention speech therapist. I left several messages so today I called and complained. Come to find out the voicemail they gave me the therapist never uses. So its good I called because she had not received any messages. She is coming on Tuesday as well.

Jailynn's little schedule is packed with therapy. Itis a good thing they all come to the house. I am trying to see if I can get Kennedy to move her Pt to in home too. It makes it easier on me and her.

Today Jailynn and I walked around outside and then all three of us took a walk. It was BEAUTIFUL outside!
Oh and I taught Jailynn to say eeewwww. Its really cute!

Still doing well getting therapy

Jailynn had therapy at home (special instruction) this morning and then this afternoon I took her to kennedy kreiger for physical therapy. At kennedy Kreiger we ran into Grace and her mother. Grace just had the same surgery as Jailynn, one week after Jailynn. i just knew who she was when I saw her. She is a cutie pie. I introduced jailynn to them and said hi and asked how Grace was doing and told them Jailynn was doing great.Then we went into Jailynns therapy. She did really well and did "speak up" when she didn't want to do something. Still over all it was a good session. She still is more whiney. She fell asleep early tonight leaning against Daddy on the couch and she was so upset when i had to pick her up and put her to bed.

I'm still waiting on Jailynn's new speech therapist to call me back. i will call her again tomorrow. Kennedy Kreiger should be calling me back agian too. They are setting up for an Ot and possibly Pt to come to our house so that we wont have to drive there.

We received our registration paperwork for the hemispherectomy reunion in July. I am so excited to go!

I've been trying to get school information, for possible preschool programs for Jailynn, no one is helping me at all. I wanna bang my head into the wall.

on the go

jailynn was been a bit weaker and less confident with walking, using a spoon and some other things. She has mostly wanted to walk holding our hand. This morning i sat her on the couch and i went to get something out of a bottom kitchen cabinet. jason opened the refrigerator behind me and i swore i heard jailynn near me saying "nah nah" i jumped up to look and didnt see her, but when i looked around the corner she was toddling around the living room! she had scooted off the couch, its the perfect height for her to stand up from, and was walking around unassisted! This would be totally uneentful and "normal" prior to surgery but this is the 1st time she has taken off by herself since surgery! Her special instruction and PT from early intervention were suppossed to come today and she was supposed to go to Kennedy Kreiger for PT at 4 pm but since it snowed like crazy that all had to be rescheduled. I am scared and relieved at the same time that she may not qualify to have her Pt through early intervention increased. I want it increased and so did Kennedy, but she is doing so well they may not give it to her. I hope so becasue she still is wobbly, cannot do stairs unassisted or pull to stand and those are 3 goals i would love to meet if she can before she gets transitioned out of early intervention. i have a ton of pics on myspace but here are a few. in the picu resting after her 2nd seizure playing and paiting in the therapy playroom at kennedy kreiger at home yesterdat when her mom mom brought us lasagna for dinner
walking on her 2nd day at kennedy kreiger