bitten!

about 2 weeks ago Jailynn was bitten in school! I was LIVID, to put it nicely. They calle dand said it was 3 bites and 1 broke skin. We rushed up to school, coincidently we were already planning on picking her up that day, just to see her new classroom. When i get there, the bites go all the way from the end of Jailynn's short sleeve shirt to her hand on her left arm ( her "bad" arm). There were approximately 6 bites, all very dark red vicious looking bites and bruises tht looked like finger marks from the other child holding on to do the biting. This all apparnatly happened in gym. 19 students with special needs with 1 teacher. The 1 aid was assisting a boy to the bathrrom. Normally the class has 2 teachers and 2 aides but for Specials like gym they do not. Not a good idea since they will be doing physical activity and some children may require alot of assistance.

There is now a plan in place to keep the other child away from Jailynn at all times. They could not move her to another class because there is only one 4 year old class this year. Of course they wouldnt tell me which child bit jailynn. and jailynn doenst understand it when I question her about it.

new brace and hippotherapy pics

Here are some pics of Jailynn riding Snickers on Monday. She rode side saddle for awhile! she loves going fast (which is really not that fast) but it makes her bob up and down and she thinks it is so fun! I am sad thinking about the end of summertime because when school starts there is no way to make it fit in our schedule, plus I am not sure how late in the day the therapist works and the earliest we could get there would be maybe 4:30?

I also put a picture of Jailynn and Camden in her crib. Jason put him in there caus ewe were trying to convince her to get up from her nap. Camden thought it was the coolest!

And also Jailynn's new shoes, Answer2 is the brand and her hinged AFO. The shoes are huge! Jailynn has a prefab Pattibob insert in her right shoe now and she is not happy about it. She fights us a little about putting the shoes on but she is getting used to it.

hinged

We picked up Jailynns new AFO today. This one is a hinged one. I ordered a Pattibob premade orthotic for her right foot today. It was like $30 cheaper to order it online from cascade than to purchase through the orthotist. He gave me all the info. He says he will shave it down if need be. He is ordering Jailynn shoes. He was suppossed to have them already but for some reason they were not ordered. So she cannot wear her new brace yet. Once the insert comes which teh site said up to 6 days, then we will make an appointment and get the shoes fitted and insert checked. I was afraid hinged woul be huge and metal but it looks alot like a "regular" AFO. Hers has green and purple foam and straps and purple with green polka dots on the middle strap.

She also has her glasses that we picked up today. Her smile is nice and healthy. She did well with the dentist this morning. Wednesday is her 4 year old check up andd sadly shots. I feel bad but it needs to be done.

Summer time

Just wanted to drop by and say that jailynn is loving the summer except for the super hot days when we cannot go outside. She enjoys summer school and even the bus. She has been to hippotherapy for over a month and loves it. On Monday she held on the whole time with just "lefty"! next week the therapist on on vacation so we have to skip a week boohoo. She is also having an extra Ot and PT session a week at home from great therapists from Kennedy Kreiger. She is getting so close to pulling up to stand. She can go down the stairs using her right hand to hold the banister but only with someone in front of her just in case.

Her new glasses are finally ready, we just got the call just need to pick em up now.

Hippotherapy session 3

Friday Jailynn had hippotherapy again. She had a good time. Whenever they stopped the horse he would try to take a nap though! We were able to get Jailynn to reach up and touch the horses mane to tell him to go. Her Minnie Mouse got to ride Snickers too. The therapist used Minnie to get Jailynn to do some reaching and such. I have a few more pis and a video but I havent installed my new camera software yet. Jailynn actually helod onto the food bucket the whole time the horse ate. she says "mmmm" the whole time he is chewing, so cute!

She is havinga good time going to ESY in school too. So she is getting PT, Ot and speech at school, OT and Pt at home and hippotherapy. The dance teacher hasnt called me back. I left a message about the heat and asking if there would be AC or fans used in the future.

Jailynn will be getting a hinged AFO as soon as it is ready. THe orthotist said he I am making a brace just for you. Now Jailynn always says "just for you".

DANCE

Well Jailynn finally was able to try a dance class. it was at a different dance school. Jailynn had a good time but on her own terms. She really paid no attention to the dance teacher. She was more fascinated with the environment. The big mirrored wall was a big hit. She did let the teacher put a Belle costume in her and carried around a fake rose smelling it. We may keep going for the 6 weeks to see if Jailynn will start to pay attention. I have to talk to the teacher first because it was unbearibly hot there and no fans or air conditioning. If that is always the case we cannot go it is just too hot! If this works out and she "gets it" We may sign her up for the dance school yera but at a different place that I found closer to home.

Jailynn made a new friend named Addi at summer school. They both get very excited when they see each other. The first day Jailynn went right up to her and got in her face and grabbed her hand too say hi. Luckily that did not upset or frighten Addi. Addi has speech difficulty and wears 2 AFO's and glasses so she has some things in common with Jailynn. They are so cute playing with each other. It just melts my heart!

Another hemi surgery parent that we met lat year at the reunion called me yesterday. She was looking for some info that unfortunately I didnt have. She did ask about jailynn and the family. Then she told me she remember me well and that I was an inspiration to her because of how much was going on in my life and stress... having a hemi child, school full time and a blind husband ect... and she said that I was vibrant and handled it well. It was such a wonderful and amzing compliment. It made me feel really good!

Tomorrow is session 3 of hippotherapy!


Jailynn now says "I'm mad" and "ay-yah" which i think is an expression of frustration or anger that she learned from the characters in the cartoon Ni Hao Kai-Lan that teaches chinese.
I am trying to update more!

eye doctor

Jailynn saw her eye doctor today. Her prescription stayed the same. Jailynn was upset by the eye drops of course and did not like having her eyes examined after the drops did their job. She has always beenvery uncooperative at the eye doctor. Still she did a little better this time. She is becoming such a big girl. They doctor was pleasantly surprized to see has much she has grown and hear her improved speech oh and to meet baby brother!

A dance school returned my call so we will go try it on Tuesday. Now i have to reschdule her brace appoinment to a different day. The dance class is only 6 weeks long and start Tuesday. We can always schedule the brace appt for Friday.

We want to work on potty training this summer. I am just afraid too much will be going on. Also with summer school I am not sure how much the staff will do with it. I want to put her on the potty every 30 mins or hour maybe. I cannot wait until she can use the potty, evebn thoiugh I know it may eb a long time. I pray by kindergarten but I know she will be successful when her body and brain are ready.

Pictures and AFO's

Jailynn saw Dr Sponsellor today. He gave us a prescription for a new AFO. We are trying a hinged this time. I asked him what would be best and he said to try a hinged one. He said Jailynn does not need an orthotic in her other shoe. He said the 2 downsides to a hinged one is they take up more room in shoes, cue me crying at the shoe store ugh! and two they do not last as long/ durability. I hope this works our for Jailynn. We have an appointment for Tuesday the 29th to have her AFO made well to be casted that is.
Her are some requested pictures... Kelly :-)

Dance Class wasted

Yesterday we drove over an hour to Westminster for a dance class. The studio was offeing free trial classes for special needs classes that would include an OT in class. I had spoke to 1 of the 2 owners last month about it. I doubled checked the webiste yesterday morning for the address and right at the top it still adverstised the classes. Well we get there at 4:40 and no one is there, doors are locked and the answering machine is on. I called and left at message at both numbers available. I also sent an email after waiting 20 mins and leaving. Well last night the owner emails me back that she is sorry but they decided to cancel the class due to lack of interest. I wasted time gas and mileage on my car 43 miles one way! Plus I made my 2 children sit in the car for over 2 hours for nothing! She offered that we could come next month for a class or two to try for free, but I dont know that I want to do it now. It is so far and I am so mad. Also we are already going to be making the commute 1-2 times a week for hippotherapy and that is 42 miles one way.

I will keep looking for dance closer to home. jailynn loves music.

hippotherapy

Jailynn had an eval and first session today of hippotherapy or equine therapy. Jailynn smiled ear to ear when placed on the horse Snickers. I thought she would cry but she did so well. We were able to get her to hold on with both hands! even Lefty the affected hand! She rode for atleast 30 mins. The therapist even said that Jailynn's posture was better after riding. We will be going back next week. I made calls and emails fro funding today because our insurance does not pay for it and it was $125 today and $95 for each additional session.
I had to borrow my MIL's camera for pictures so I will get them up when I can.

warming up just a bit

Jailynn is still not sure what to make of this baby in her house. She calls him baby. We have gotten her to say "Tamden" (Camden)or "budder" (brother) a few times.

The other day when he cried out she grabbed Jason's hand and said get up daddy. She wanted Jason to go get the baby cause he was crying. Then Jailynn started crying because he was crying. Today I got her to hug him. Yesterday I did get her to kiss his forehead.


He is congested and Jailynn has yellow snot. It really sucks having 2 sick kiddos. I cant do anything to make it better. I am going to see if I can get the pediatrician to let me bring Jailynn with me to Camden's appointment to check her out.

This week is Jailynn's spring break. So lots of time with mom and dad and of course new baby brother.

a new family member

Jailynn's baby brother Camden was born on Thursday March 18, 2010. He was 7 pounds and 4 ounces and 19 3/4 inches long. He is healthy and happy! Jailynn is still warming up to him. She will occasionally tell him "hi baby". Not much more than that though.

On a sad not we found out that a little boy that we met and came to hold close to our hearts through the Hemispherectomy foundation passed away on March 20, 2010. My heart is breaking for his family. Rest in Peace Srikar! You will be greatly missed.

So Far So Good

Jailynn has been totally depakote free for several days and she seems to being doing just fine! Just being her silly little self!

BYE BYE DEPAKOTE!

Jailynn is now completely Depakote free. Last year at this time she was on 3 meds. She is now down to just one, Tegretol chewables 2 twice a day. In about 6 months herneuro may taper that. She is doing very well.

1 year post op!

Jailynn's hemispherectomy was over 1 year ago. February 5th, 2009 was her surgery date. Her last seizure was Feb. 24th, 2009 which we think was a result of the surgery trauma (that also happens to be my mother's birthday). So hopefully on the 25th of this month we can celebrate 1 year seizure free. As of the 21st of this month Jailynn will be completely done with Depakote Sprinkles. Then she will just has tegretol chewables for about 6 months and they we can try to wean those.
She has come so far in a year. This time last year she was not walking. She was still sedated and drugged up. Now she is running and thinks it is funny to run the other way when I call her. She is in school and loving it. She knows so many more words and loves to sing songs. She remembers every song! She loves to dance, play babies, barbies and play kitchen.

Unfortunately Jailynn hates snow and we have had 2 blizzards back to back and we are stuck inside bored.....

We are also trying to prepare her to be a big sister very soon...

Happy New Year

Jailynn is 10 months seizure free. We are praying that 2010 will bring us her 1 year seizure free mark and more, the end of all seizure medicines by the end of they year and tons of learning and progress! Hoping this is the year she learns to pull up to stand independently and climb stairs on her own safely.

We are also praying for a healthy birth of Jailynn's baby brother Camden in March/April.

Jailynn has made so much progress in 2009 and we cannot wait to see how much more will come.

One of her newest things is singing and dancing to "If You're Happy and You Know It". It is really cute when she does it. She also is loving to carry around one of her baby dolls now when she is not carrying around a little Minnie Mouse. She has started to develop the late two year old attitude. I heard most children get that at age three though anyway, so as far as that goes she is on schedule haha!