Merry Christmas

jailynn loved her presents. She still is not ready to understand the whole idea and concepts. She does know that Santa says HO HO HO and two lines from jingle bells. She says "merry tistmas"! She cannot say the c sound.

She was able to open gifts very well this year. She loved her gifts. She loves her barbie house and babydolls and stroller and crib for them.

She was very excited to see family members especially Pop-Pop!

Merry Christmas everyone

MerryChristmas!

These are pictures of Jailynn at the mall with Santa and a few I took of her in front of our tree. I used the ones I took as our Christmas card picture. Look how long her hair is! Oh and she loved Santa!

Right now we are watching the blizzard snow fall.

A few Pictures of Jailynn

Jailynn's her is growing nicely. We left some of her bangs long her last hair cut so they can be pulled back to cover her one bald spot were her incision lines met from the T shaped cuts from surgery. I can finally get most of her long bangs pulled back now.

She has been doing great wearing her glasses all day.

She is giving us a bit of trouble taking her depakote sprinkles. I keep having to hide it in different things like cheesecake and chocolate pudding.

She sees her neurologist Dec 21st, it is possible we can start a med wean. Not sure if he will want to wean tegratol tablets or depakote.

She has begun to notice outside christmas lights in the neighborhood and really likes them now. She says "lights, lights!"

Jailynn's Progress

We have Jailynn's first report card. Being only 3 it is not a regular report card with A's and B's but it is marked by skills, mastered emerging, and unsuccessful but tried.

We have notes from all of her therapists about her progress. Jailynn is making great progress in OT, PT, Speech and special education goals. She is getting better at socializing and playing with other children at school.

All of the behaviors we had went to behavioral therapy for have resolved even though we stopped therapy due to the time and missing school days.

A few days ago she said her longest utterance, "Oh Mommy, it's medicine time!" Jason and I were both thrilled. She mostly says two and sometimes 3 words per phrase.

On bad thing is she is getting really stubborn now about taking meds. Especially the depakote. Everyone has always been so impressed how good she was about letting me give her meds. She even sometimes refuses a gummy itamin, which tastes yummy.

She sees her neuro Dec 21st, possibly a med wean will start then.

Sick Jailynn

My poor little one was sent home early today for getting sick. She has had H1N1 and Flu shots but there are always other germs. I swear if there is a germ in a 20 mile radius this girl gets it. It has not been medically diagnosed but I know she has a weaker immune system. The medical issues never cease.

The soon to be big sister

We found out today that Jailynn is going to have a baby brother.
We keeping asking her to say brother and she will say sister and laugh, that little stinker!

Her daddy and I cannot agree on the name yet. I want Camdyn and he wants Caleb. Jailynn said yes to Camdyn today and not to Caleb and I could get her to repeat Camdyn several times.

What Jailynn has been up to

Jailynn is still loving school. Everyday she is so happy when I get her off the bus. Whenever we go outside she will look towards the end of the street and say "bus, bus". Her bus driver and aide are always telling how she was singing or talking or counting for them and the other bus riders. Jailynn has now starting looking out the window when the bus stops at our street and smiling or waving at me before she is taken out of the car seat. Once i get her we walk home together and she will normally sing or dance while we walk.

She still does not like coloring too much only for 1 minute or less. She actually get a page of homework which is mostly coloring. I just let her scribble her best which sometimes is only a line or two.

I saw today that she has become quite good at pulling out her two wooden chairs from her little table at home. She will pull them out and back up to one and now she will actually try looking behind her before she sits. She is pretty successful at it now!

She has also gotten very good at roll and throwing a small ball. This is all credited to her Nanny (grandma). She spends 15mins to an hour everyday next door having "nanny time". One of Jailynn's big kicks is telling or asking people to "sit down" so nanny and her sit down a lot and often get one of the dogs tennis ball and toss and roll them back and forth. She has learned from watching Nanny do it to hide the ball behind her back and say " One, two, three!" then release the ball.

She likes to find things to put on her head or others heads and tell you hat for example the dogs sweater little bowls ect...

Jailynn also loves to tell people "see ya and bye and I gotta go" then she makes you walk away so you can come back and make her laugh.

I love this little girl so much. I love seeing and hearing when she starts doing new things.

singing

When Jailynn came home today from school I sat her on the couch to take off her jacket. She started singing something but I could not make out the words. Me and daddy discovered that she was trying to sing "Where is Thumbkin?" It was all garbled but she had the tune down perfectly. Later in the tub she started singing the "I love You" song from barney to her Barbie doll. I have been singing that for about 2 months to hear when I turn off her light and go to lay her down in the crib. When she sang it to Barbie she even did the kiss sound. She has also been singing "friends, friends 1,2,3. All my friends are here with me" She is picking most of this up at school!

We have taken her to behavior therapy appointments 2 times now. this Friday will be our 3rd appointment. 2 weeks ago we saw the therapist and ever since that 2nd time Jailynn has not played in her dirty diaper at all. We have been sneaking in her room in the middle of the night and placing toys in at the bottom end so that when she wakes up she will find them and play with them instead of poop. Also when we get her out of the crib after a nap or in the morning if she has not done it we sing a made up "Clean hands" song to her. she now tries to sing that song as well and she reminds you if you forget to sing it! These efforts have been working so well.

Since therapy started she has also stopped kicking me to death when I change her diapers. We lay on the praise really thick and it is working so well!

so angry with the bus

Do you know the Juvenile song Back that ass up?... It is a rap song....




... well that is what was playing on the school bus yesterday when I stepped on it to get Jailynn off the bus when she came home from school. It took me a minute to realize it. I was so shocked I could not even say anything to the bus driver. I did not listen to see if it was the version that said "ass" or "thing" instead of ass. Either way that it inappropriate to be playing on a school bus! I called the bus company and complained to a supervisor. He said they will take care of it. I swear every week there is at least 1 problem with the bus or driver.

It made me even more mad because yesterday Jailynn showed us another example of how fast she is picking up words. Jason was listening to 98 Rock on the radio and one of the guys was saying "POWER, POWER" over and over in a strange growling type voice and Jailynn looks up and starts saying it the same way. It was funny but it shows you how quick she can pick it up and repeat it. That evening Jailynn was playing with a cheap munchkin cheerleader baby doll and kept pushing her belly and the same cheer song would play. after a few times i hear Jailynn in the living room saying" muchins say how-e-do" kinda of garbled but she was trying to sing the cheer. What if she had came of the bus saying "you look good back that ass up"? or something similar I would have died and tried to hurt the driver.

ugh i am so fed up.

more bus issues

Yesterday I interned in my kindergarten class all day then had college at in the evening. I look at my cell i have a text call home its an emergency I immediately think seizure. I was wrong. Jailynn was supposed to get home on the bus at 4:30 and her bus didn't get her home til 6 pm! I was livid. Her grandma was home from work early and was waiting for her with my neighbor. they were so worried. The bus driver wouldn't tell them anything when she came, she said call the school or bus company. Come to find out before she got to Jailynn's school to get them she had hit a cars mirror and had to wait for a police report. ugh! i have talked to the school about it. They are frustrated too. The transport company did not even notify the school. the school had to keep calling and calling until they could get through to the company.

I was so mad we didn't even get a call to say the bus is late your daughter is safe don't worry.

Jailynn also vomited once at school today. she did at home on saturday too. both times around the same time of day.

school transportation issues

Jailynn's school bus was supposed to get here today at 8 am. I know that it is the first day and all. We were prepared for the bus to be maybe 15 mins early or late. Well it was about 35 mins late. When it was 20 mins late I called the bus company and asked, the man told me " well its the first day they are running late, all I can tell you is they will be there." Somebody should know where these buses are at all times. He could not even tell me about how late it was running. Finally Jay and I gave up we were getting loaded in my car. I was gonna take him to school and then drop Jailynn off late at school. right when I am about to put Jailynn in the car I see the bus park on the main road near the end of my street. Jailynn is scheduled for DOOR TO DOOR service. I even told this driver personally that my husband is blind and can she honk the horn in front of my house when she comes. She did a test run last week and drove down my street. I was never notified that she would not be picked up in front of our home. How in the hell can he hear her from way down the road when she is on a busy main road honking. As a disabled student my daughter is given door to door service and I have it in writing.

So I have emailed the transportation manager, I can't get through on the phone. I also have a call into Jailynn's school, they can't control the buses, but they can make a call to help me a little.

I still haven't heard about or received payment for driving Jailynn to school last year, since she was entitled to a bus but they could not provided adequate transportation.

visiting

Jailynn, Jason and I visited baby Richard's family at Hopkins today. Unfortunately Richard wasn't feeling great and was sleeping. I only was able to see pictures of him. His family was so nice! Jailynn had a great time entertaining them! She was very social and showed them her marching and walking skills.
Hopefully he will get to go home soon.

"bye friends"

We went to breakfast as usual this morning. Jailynn normally will say Hi and Bye to the other regulars and waitress at Friendly's but today I told her to say bye friends. Well I'll be darned if she did not repeat me perfectly clear! I managed to get her to say it a second time. I was so proud. She said the word "friends" so well!

Later at home she was playing with her laugh and learn piggy bank and putting the money from that into her elmo purse. I looked at her and said, Jailynn can you say purse? She said "purse" then I said, you are putting money in your purse? She said "money in purse"! It is not so common for her to say or repeat three or more word phrases. I am so happy. She also has been saying peekaboo and I see you!

She wants to look at my belly all the time and say hi baby and pat it too.

She starts school on August 31st her teacher should be proud and exicted to see what she has learned over the summer.

jabber box

Jailynn has been talking away! Her speech teacher is so impressed! Sometimes she just likes to nonsense babble. She will stick her finger in my belly button and say his baby! kiss my belly and then say "all d" which means all done and then cover my belly with my shirt. SHe also asks me for "tatos" tacos all the time.

She has really been doing well going up the stairs with one hand held. She molds on the rail and steps so well now.

head shaking

Jailynn has been doing this head shaking. At the reunion I had a discussion with a neurolpsychologist Dr Salorio, Jailynn has seen her before. In an email she suggested 2 different behavior clinics at Kennedy Kreiger. I called to get an appointment. They cannot get her in until September. She will have to miss a day of school. I was told it is probably a self stimulating behavior and if not stopped could become a permanent behavior. It has become more frequent. She does it a majority of the day now.

All Done

Jailynn is done with Dilantin. Thursday was her last dose and as of Friday she is Dilantin free! So far so good. I haven't seen any problems.
She has been taking longer naps, but she is also eating more at each sitting so I believe she is going through a growth spurt.

She had a sleepover weekend with Nanny while mommy and daddy went to a B&B for our anniversary.

She is till toting Barbie around everywhere and loving Blues Clues. SHe is doing so well with walking independent and is not wanting to hold our hands as much.

Our fundraiser

We held a fundraiser st our local Friendly's Restaurant last night. It turned out great! The place was packed! I made a lot of money selling ice cream for a year raffle tickets, (donated by Friendly's). The manager Debbie and our favorite waitress Patty bought Jailynn a tutu and princess crown because they said she is their princess. I was so proud and happy about the turnout. Jane was their and did an awesome job helping me sell tickets.

In other good news, Jailynn is going to be a big sister! Spring 2010.

uh-oh!

A new saying I have recently heard Jailynn say, maybe the past 2 days is "uh-oh". Very cute of course.
I ordered her Blues Clues books from ebay and they came today, she was so excited!
She did very well going up the stairs with daddy today. He held her hands but she held the rail very well and leaned forward to step instead of leaning back.
Our old baby monitored crapped out so we decided to buy a video one. This way we can catch Jailynn when she is starting to play with her poop. This morning i was surprised to see she went but didnt play with it. Then again I woke up from her voice on the monito at 6 am so she didnt have time to get to it.

article about Jailynn

This is the web address for a article about Jailynn in a local paper called the Dundalk Eagle. I think the writer Heather Pearlberg did a nice job.

copy and paste this address.

http://www.dundalkeagle.com/index.php?option=com_content&view=article&id=810:toddler-will-attend-school-after-having-brain-surgery&catid=26:front-page

chewables

Jailynn started chewable Tegretol tablets instead of the liquid . Now we one give her 2 chewables (which i split in half first, i am paranoid) She has been taking them 2-3 days and it is going great. No more spilling it or stickiness. She likes taking them just fine too, but she has mostly been a good medicine taker for over 2 years now. She wasn't so great as an infant lol.
1 more week of Dilantin and she is finished with that. So far so good.

I tried making a list of words she knew. I didn't complete it but it was over 50 words. She came so far from the less then 10 that she knew when she started speech therapy. So much more has come after her surgery too. I am so happy and proud. She is really trying to be able to express her needs more and more.

I have gotten her to the point so far that she won't cry when I sit her on her potty chair. She still hasn't went potty in it though. But hey, baby steps! I am going to buy an extra one. I think I am going to get a small simple one from Ikea, I think they are only $4.

She has been doing good the past 4-5 days with walking alone and not whining to hold hands with me.

"want this"

As I am typing Jailynn is sitting on the living room floor with her barbie. She is saying "want this... no. want this no" It reminds me of when I show her clothes or toys. I will offer her 2 sometimes 3 choices of outfits and ask her do you want to wear this, sometimes she says no to everything and sometimes she will say yes or point to one. similar with toys. It is so cool to see her picking up on things. I heard her trying to sing twinkle twinkle today with a toy that plays the melody. She says please very well now, we just have to cue her when to say it.
She learned the names of 2 girls this weekend at the reunion, Alex and Jody. I have some pictures and I am waiting for a free CD of pictures taken by Heathers husband, one of the photographers to be mailed to me. ** right now she has that toy singing twinkle twinkle!!!!! Next year the reunion is in Indianapolis. We participated in 2 studies (via paperwork questionnaires)

We had a play date with the new neighbor's child but he ended up being punished for not listening and his sister is not well today because of teething and not getting sleep so we will try tomorrow.


She is stilling playing with her poo. Yesterday it was so bad i went straight to the tub with her. I tried a pull up last night with a onsie ( it was long sleeved but i cut the arms off ) and thin summer pj pants, she didn't play with poop, but then again she hadn't pooped. I hope this works. We may be going to see a behavior therapist at Kennedy Kreiger.

Reunion quicky update

I have some pics not a bunch as I was busy listening to speakers. I will post as soon as I can. I need rest after a long fun day. I just wanted to say how much fun we had. I appreciate everyone who put in work that helped make the Reunion happen and be great. I want to thank all the families who talked with us or played with Jailynn. Evryone is so nice and has such beautiful children. I cannot wait to do this again!!!


I have been told my updates are lacking. I will try to update more, please yell at me when I am slacking

Bye Bye Dilantin

We got the go ahead from Dr K. today to stop the Dilantin! We will give one dose only instead of 2 for 2 weeks then stop it all together. He was very pleased with how Jailynn is doing. Jailynn walked all around the 5th floor of Hopkins outpatient center today without holding my hand! Of course she was holding Barbie! We spoke to a few people we didn't know that are here for the Hemi reunion and Srikar"s family. Jailynn walked around telling everyone "hi" and making sure everyone knew that Jailynn was in the building haha.

We cant wait to make more new friends tomorrow and Saturday! I cant wait to put faces to the email posts from the yahoo group.

Jailynn even walked around outside down the sidewalk on our street tonight without holding my hand!!! She was never been willing to walk outside not holding a hand! 3 neighborhood ids came on our side of the street today and played on our walkway and porch with Jailynn she was so happy to have company.

barbie

Jailynn has been carrying around a barbie for the past 3 or so days. Someone gave it to her on my birthday in January. She has picked it up before but lost interest after a few mins. Now she always wants it. We decided to finally use her walmart gift card that someone gave her for her birthday. We bought 4 new barbie for her. She seemed very excited as I showed them to her and put them in the cart. We did alot of other shopping today and went to a little block party at a local church. She had fun and was so well behaved.

on 4th of July she loved swimming and bouncing with us on the trampoline with us.

We are all very excited to go to the Hemispherectomy Reunion this weekend.

PTagain!

Jailynn's Kennedy Kreiger home therapist started back today. Someone else came with her to do the eval. Her therapist thinks she regressed a bit with her walking, mostly confidence and stability. I agree. Hopefully now Jailynn will get back up st speed with how she was a month or so ago. She wants someone to hold her hand all the time now and acts scared most of the time if you let go. We all know she can walk independently she was doing it for months.

Her Kennedy speech therapist will be new for us and she comes Monday. Her Kennedy OT is on vacation and should be calling us soon. Her infants and toddlers OT had ordered a beink splint before Jailynn turned 3, the order was messed up and we finally received it today in the mail. The thumb part is too long thought. The therapist is coming to check it and fix it this coming week.

Jailynn should start June 29th with Extended school year services, she is only getting 1 hour Pt and 1 hour OT. I called the school today because we have gotten no word about when where and who is doing her therapy. All the school IEP office lady could tell me was that it would be at home and someone should call. I asked when should I expect a call and from whom. She said she has no idea.... great right!?

new words

Jailynn has 3 new words she is saying regularly. They are "sure", "hold" and "play". She is so cute. Today I was able to put her hair in a ponytail! she really didnt like it at first but so far she has kept it in all day. I took her across the street to play with the neighbors son. She had such a fun time and he played so good with her too.

Home from vacation

We went to Ocean City this week. jailynn was getting over being sick and was a total crab the first two days. She didn't seem like my sweet daughter at all. By yesterday day 3 she finally turned back into my sweet little girl. It was too cold and windy to enjoy the beach. jailynn wasn't wanting kiddie rides. Maybe next year?

I received an email from the reporter from the Dundalk Eagle. She is going to call me and do another follow up article about Jailynn. I am planning on doing a Friendly's Fundraiser night to raise money for the Hemispherectomy Foundation and I am hoping she will had that to the article.

While on vacation I taught Jailynn to say "play". She will sit on the floor and ask you to play or scoot off the couch to get to the floor to get her toys and say play. It is very cute.

getting sick

Jailynn has been sick since Thursday. We though it was allergies at first. That night at dinner time she vomited. She had a temp. I have been giving her Tylenol she keeps running 100-101F. I am sick since Friday. My throat hurts, im achy and my nose is congested. I'm not sure what all is bothering Jailynn since she cant tell me. She have been lounging on the couch for 2 days together. She keeps making me watch Blues Clues. that's all she wants. We did get her to eat more today than yesterday. I pray we get better by Monday so we can go to Ocean City. I hope her daddy doesn't get sick.

I noticed she went to school for 3 weeks and was sick 2 times. I hope this doesn't continue when the school year starts again.

"Wuff foo"

"Wuff Foo" that is what it sounds like when Jailynn says LOVE YOU. It is so cute. If I say Love you to her she will say it back. She will also do it again if I say tell daddy. I cannot wait until she says it on her own to us. She also just started saying her teachers name. I got her to say it yesterday. Her teachers name is Kelly or Ms. Kelly. I told the teacher yesterday that she could say it. Today the teacher said Jailynn needed help with her snack and she looked over at the teacher and said "Telly, Telly" I am so proud of Jailynn. Tomorrow is the last day of school though.

Yesterday I spoke to the supervisor with transportation about my concern for the fall and the bus transportation. He said for me to contact him at the end of July, that's when they will be doing the schedule. I need Jailynn to have no more than 1 hour ride on way.

its a shame...

that school ends this week for Jailynn. Not that I want her in school all the time, but she just got used to it. Today I dropped her off and her teacher said i could just put her on the carpet near the toys. jailynn scooted right to the play kitchen and food and started playing. It was like I wasn't there! It is good that she will be in the same classroom with the same teacher next year. Only different classmates, I do think 2 or 3 of the same kids will be there with her though.

I have gotten her to repeat "I love you" a few times. I am going to keep on working on it with her. I cant wait until she spontaneously.

no crying!

I dropped Jailynn off at school today and it was the first day she didn't cry! Too bad this is the last week of school and we will have to get her readjusted in September.
I gave her teacher a bag of over 30 books today that I wanted to donate. Some were from my best friend. The teacher was so happy to get them and I felt really good giving them.

The hemispherectomy reunion is coming up. Jane and I are going to have a Friendly's Night at the Friendly's on Merritt Blvd. I hope we can raise a nice amount by doing that!

davastated ( not about jailynn)

I followed a blog on her for themcdonald five i was shocked to see this copy and paste the address into your tool bar. http://www.kvue.com/video/?nvid=367999&shu=1

I also read a blog the mother did on another diary site.

Please pray for this little beautiful girl Dakota.

This sickens and sadness me so much.

Please pray for Emma who had Hemi surgery recently as well.

Happy birthday!

Jailynn had a wonderful birthday!We had a great turnout with the party and I had the exact amount of food needed. All the cake was eaten and I do not have a fridge full of left overs.

She got a ton of clothes and lots of art supplies. The cake was so cute. jailynn learned to say "I three" and "happy" today she also makes a good attempt at singing the happy birthday song. I have pics and some video but I have to upload it all.

@nd full day of school

I am curious to see what Jailynn's teacher says today when I pick her up. Today we got to school 14-20 mins early. I need to adjust my leaving time from home. I am trying to get it just right. Jailynn kept trying to pull my hand and walk out of the classroom. She was mad whenever I made her go back in. She was upset and whining. I am sure she knew today I was leaving her there. It broke my heart and made me feel so bad. I hope she gets used to it. The only thing is there are only 2 more weeks left and then it ends and I will have to go through this all over again come August/September.
I pray she took a nap. If not she will be zonked out when I put her in the car.
At least she has tomorrow to recover before her birthday and party on Sunday.

feeling better

I can tell Jailynn is feeling better today. No getting sick and she has eaten today. We have been outside alot back and forth and played with chalk and on the swing set. jailynn says "outside" and drags me to the back door, then we says "wee" when we go out. That means she wants to get on her swing.

She had a good first day at school Tuesday. We will send her tomorrow and I hope she has a good day again.

Home sick

Jailynn did well at school yesterday but would not nap. When she came home she was beyond exhausted. She vomited after dinner time and i cleaned her up. She went straight to sleep at 7 pm. She normally goes down around 8.

We thought she just worked herself and got sick.

i took her to school today. they called me around 10 asking me to come get her she was sick. She vomited 4 times or so at school and once in the car. She is in a very playful mood though. She is sipping pedialtye now. we will keep her home tomorrow and if she is okay tomorrow then she can go back Friday.. I pray she is well by sunday, her birthday

big day tomorrow

Tomorrow is the big day. Jailynn starts school. I am so nervous. I am taking her to and from school because the transportation system had her with a 2 hour ride to school and 2 hours home. She would be 1st picked up and last dropped off on her bus. i know she cannot handle that.

Wish us luck. I know I am going to cry.

Ready Set GO!

I went to Lakeshore Learning Store today. I love that place!!! They have the best teachers stuff and toys. A double good thing cause I am a mom to a 3 year old and in school to be a kindergarten teacher. Well when I came home Jason told me he had Jailynn on her swing set while I was gone. He said he got her to say "Ready, set go!" and then she would say wee! Whee is not new though. I got her to say it for me later and then I took this video when I put her on the swing. It is hard to get a video of her. She normally just smiles at the camera and in this video she is not super happy because she wants me to put it down.

Tacos

We took Jailynn to taco bell today and I was talking to Jason about what I would get her. Jailynn looked up and screeched taco, taco taco! It was so cute! She is always telling her daddy shower, meaning for him to go get in it. We have said goodbye to 3 therapists already. It so sad they have to leave us. We have given them each cards. SHe gets to see Kristy her PT one more time on Friday. We are going to miss her. She has been so devoted to Jailynn.

Jailynn was able to have 2 therapies outside today because the weather was nice.

only one week away!

We received our letter from the school board Frdiay evening. They want Jailynn to start school Monday May 26th! That is 1 week away now! Mommy is panicking. I am excited and nervous. I worry about the tiniest things. What if she wont eat for them, what if she is scared. What if they dont understand many of her words when she is trying to tell them something. I knwo she will be okay but she is my baby.

On the other hand she has been doing so well. She is becoming better at telling us when she wants things and reat at telling us when she doesnt wan things. Her favorite words right now are outside and NO oh and EIEIO alot!

I am sad to see our therapists go. They have made such a difference in our lives over the past three years.

Neurosurgeon checkup

We had an appoint with Dr. Jallo today. It was a long wait today but Jailynn behaved so well. She walked around saying hi, bye and blowing everyone she saw kisses. She gave Diana Pilas akiss and tried to scar her by saying "rawrrrr". She also hugged Dr Kossoff and blew him kisses. They were all impressed at how well she is doing and her walking and talking. Said her incision looks good. He wants to see her back in six months.

we checked it out

We went to the school, it took almost a half hour to get there. The school was built in 1933. The building is obviously old. Inside you can still tell its old but you can see they are trying hard to make it look nice. The lockers are all painted bright colors and they have bulletin boards with childrens art and projects everywhere. The school is kinda small. The 3 year old room is small but big enough. The teacher said right now she has 11 students in her room to 2 adults. School goes from 9-3. Jailynn will probably spend a long time on a bus considering how far we live. We livwe right near the county line and the school is past downtown Baltimore. THere is no parking. I did get lucky and got the 1 spot open when we got there. The teacher was very nice. Most of her students were napping when we got there,. SHE is very open and flexible with nap time. The teacher does everything with the children. She eats with them and diapers them. Jailynn would be pulled out for therapies but not during instruction. They go to "specials" like art, gym, pool and i think music too. The school is 88% african american and only 8% white. Jailynns would be the only white girl in her class i think, at least til the next school year starts, then I dont know. I feel bad she has to be a minority but she does not know any better and this will help us teach her to be accepting of others and non-prejudice. I think that is a big problem in our world today. So please dont misunderstand me. I starting filling out the registration paper work I am almost done. I have this form that needs to be filled out by a doctor but I am calling them becasue Jailynn's doctor just filled out a whole darn packet! Its the same kind of thing.

I was really mad when we first got to the school. I called Friday to tell them I wanted to visit and asked them if Tuesday at 2 pm was good and I was told yes that is fine. When I got there today the 2 ladies in the front office were like" oh no today is a very busy and very bad day to visit, our principles are not here". I was ready to throw a fit. Finally they had 2 people from another office help us. They gave me and Jason and Jailynn a little tour and took us to meet the teacher. She was very willing to talk to me and help me.

good news

The IEP meeting went pretty darn well. Jason tried to fight for speech service for the summer but they would not give it. They are giving her PT and Ot during the summer. They want her to go to the Baer School, we are going to visit it on Tuesday. They want her to start school at the middle/endof May and go for about 3 weeks. It will be good for a trial run before the new schoo year starts. I wasnt ready for it so soon but I have to give it try. My little baby is going to school. During the school year she will get speech once a week, Pt twice and OT twice. I am very happy with that. We are going to ask Kennedy Kreiger to do speech during the summer through our insurance.
I really thought the meeting would be worse than it was. They were 30 mins late starting and it lasted around 2 hours. Jailynn did great, we had her grammy there to tend to her. I thought she wouls scream and cry when she was tired but she was a trooper. Of course she passed out for a nap as soon as we got home. Mommy did too.

Nervous

Jailynns IEP meeting is tomorrow morning at 10 am. We decided to ask my mother-in-law to come to help look after Jailynn while we are doing some serious talking. She is very skeptical about Jailynn going to school this fall. She thinks it is too ealry. I do agree in some ways. Jailynn is metally more like a 2 year old and 2 year olds do not go to school. However we want Jailynn's services to continue and she really needs to be socialized with other children. I truely belive that she will benefit from it.
Please pray with me that jason and I can be patient, convincing and strong tomorrow. I am a known cry baby when it comes to anything to do with my daughter. Please pray the the school officials will offer what is truely best for Jailynn and cooperate well with us as well.
I have heard all too many horror stories... a few good ones too. Everyone is from so many states though and everywhere is different.
I have a little list of wants/concerns to take with me. Wish us luck!

play, heat and IEPs

It has gotten so hot. Jailynn got sick this weekend after swinging outside for awhile. We think it was the heat. we became very careful about taking her inside very often.

Jailynn has been playing with a neighbor boy, Braxton. She loves him she stands on my proch and calls for him. Saturday we had a couple and their daughter over. Jason had met them but I had not. They were nice and their 1 year old was so cute. Her and Jailynn followed each other around.

Sunday jailynn was able to play with some cousins at a baby shower and Braxton when we got home.

We bought sand Sunday for her sandbox. She tried to eat some of course and loved playing in it.

Her IEP meeting is this friday. We are nervous. I pray that they agree with us and we get what is best for Jailynn.

nordstroms

I had bought Jailynn 2 pairs of shoes at payless. She has a new afo and needed new shoes. I had to buy 2 different sizes. well after thinking about how much i paid for payless shoes I decided not to put them on her and try Nodstroms. They have a reputation for being the only place who will sell you two different sizes as a pair.

I do not know why I didnt just buy from there in the past. It would save me a bunch of frustration. The sales person at Nordroms did all the work for me. She ened up with white and blue Nike shocks. They are cute and she can walk well in them. The New Balnace's they had there did not fit her with the brace. We ended up with a size 8 for right foot and 9 for left foot.

I will definately go back.

I also found out today in the City School System, they will not allow Jailynn to have summer services if she has an IEP in place before she turns 3. So as long as we wait til June to sign it, They will have to give them to her. I have this from a VERY reputable source. I want her to have summer services to help prepare her for school. I feel like stopping therapy for the whole summer will make her regress.

jailynn being a scary monster

Please read my last small post too. I am anxiously awaiting an update on Srikars surgery. This is a short video of jailynn being a scary monster. I had to egg her on to get her to keep doing it when I record. You will hear eventually she starts saying cheese. She knows exactlly what a camera is, so its hard to get video. She will just stop to pose. That is her daddy with her and my loud voice is in the background too. She loves to get a reaction by scaring us. the cane she is carrying is a old white cane of my husbands (he is blind) he removed one section of it to make it shorter so she could play with it. she liked to take his. She does NOT need it to walk she just likes to pretend to be daddy and likes to bang it on the floor.

srikar

I had the pleasure of meeting Srikars family today. He is having a hemispherectomy right now. Please keep this beautiful baby boy and his family in you prayers as he has surgery and begins the recovery process.

Happy Easter

Jailynn enjoyed her Easter. The day before we dyed eggs with her Nanny. jailynn calls them apples. I guess she thinks any round food is an apple.

Easter day we gave her an Easter basket. we went in the afternoon for lunch and an Easter egg hunt at my aunt's house.

For dinner I had my mom and sister over and we ate dinner at my MIL's house, I paid, she cooked! It was great because our dishwasher is broken!

I really enjoyed our day and the weather was nice enough!

rained in

Jailynn and I planned on going to the zoo with my best friend again but it's raining! Instead we may go out to eat dinner since her daddy will be at a going away party for one of his friends.

jailynn has been trying to run alot lately and is getting better dealing with therapies. She has been crying less during therapy and the therapists all say she is amking progress.

She loves running around the house growling like a monster.

bad haircut

Jailynn had a haircut today. Well only a bang trimming. we did not wanto get her hair cut in a bob this time. I want to see it get long for a while. Also she wouldnt stay still so we couldnt do an all over hair trim. before surgery jailynn had been tolerating haircuts very very well. Now is a different story. she cried and swung her head around even when the lady was not touching her. Now her bangs look aweful. they are all uneven and too short. I wish I had not got them cut at all.

singing

Everyday Jailynn is trying to sing something new. She has been trying to sing Ba Ba Black Sheep and the Handy Manny song. She does they Ba Ba and yes sir yes sir the rest is sing song babble t the beat. She is amazing. today she even did it in fornt of one of her OT's!
The OT said she s so impressed with Jailynn already. Her attention was so much better today.

Hoping the weather is good this coming week because I have spring break and I want to take Jailynn to the park and out and about as much as I can while I am not in school. We haev been trying to expose her to as many different places as possible lately. Hopefully I can get a play date or two in for her around therapy.

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