New Addition to the Family

Meet our new dog - Bishop
We got him the day after Christmas from a family that is gone all day and wanted the dog in a home where he is not in the crate all day. Bishop is a 6 month old Lab/Border Collie mix. He is a great dog, still has his puppy ways though. One of the great things is that he has all of his shots, rabies etc. We got his crate, food and food dishes. We got him a new collar and leash. He loves the kids and is very good with them but sometimes licks them too much when they are on the floor. He is potty trained as well. We are going to take him to a training class in the first few months of 2009, so we can do this dog ownership the right way. Here are some pics.


He has this little white square on his side admist all the black, it is kind of funny. The cat is not too thrilled with him at all and is showing Bishop who was in this house first. But we know that they will learn to tolerate if not get used to each other in the next few months.

Hard to believe this dog is only 6 months old. He is going to be a big dog. We are hoping he can be trained well and be a great companion for the kids especially Evan.



It is a little hard to see but here is a pic of Gabriel riding his new bike.

Christmas Morning

Well I have to say that our kids has a pretty awesome Christmas this year. Between us, Santa, the Grandmas and other family, they got some pretty great gifts.

Cynthia in her new jammies waiting to be able to open gifts

Gabriel in his new pajama bottoms waiting to open gifts

This is what Evan was doing while we opened gifts, I just did not have the heart to wake him up after how cranky he was on Christmas Eve.

Gabriel with his long awaited Lego Passenger train, he actually found this gift in the garage long ago and was so excited for Christmas to get it.

Cynthia is very excited over her Twilight Movie Messenger Bag

And her big gift a hand held video camera, MP3 and digital camera. Cynthia is going to be the family videographer.

As you can see Evan woke up and was excited to open his gifts

Gabriel was so nice to let Evan open their joint gift which was the Lego Cargo train set and Evan got the train station so the boys had the whole set basically. Gabriel spent the whole day building it.

And guess what Santa left at Grandma and Grandpa Justinich's house - Yes bikes for Gabriel and Cynthia. Cynthia's bike was damaged when someone attempted to steal it from school and she held on to it and the brake came off, so she was riding her Dad's bike. She now has a cool new bike.

Gabriel got a bike when he turned 6 years old, it was the 16 inch size, well it has two flat tires and he has pretty much grown out of it, we were going to wait until his birthday but Santa thought he needed one now. This is a 24 inch bike and it is a bit big but he will grown into it and be able to use it for probably at least 5-6 years.

Evan got this cool little recliner from Grandma Josie and Grandpa Lawrence, here he is eating a cookie while watching a movie.

Cynthia Got:
Video Camera
Twilight Bag
Key chain for Bag
Clothes
Sweatshirt
Hat
4 New books
Gaia Gift card
Cash
Target Gift Card
Smell Goody stuff
Ulta Gift Card
New Bike
probably a few other things I am missing

Gabriel Got
Lego Passenger Train
Lego Star Wars V-19 Torrent
Lego Star Wars Magna Star Fighter
Lego Star Wars Ship
Lego Cargo Train(combined gift)
Lego Mini Racers cars
Lego Mini racers track
sweatshirt
cash
target gift card
movies
more stuff I may have missed

Evan got
Lego Cargo train (combined gift)
Lego Train Station
Thomas the Tank Portable train track
Plastic track set
Plastic Diesel 10
Wooden Hank
Wooden Emily
Wooden Molly
Wooden Harold
Wooden Proteus
Wooden Breakdown train
Wood Tool box set
sweatshirt
jammies
See n Say
Thomas Movies
Recliner
other stuff I am sure I missed.

Rudy and I did pretty well also. We were excited to get the kids some of the things they got. Hope everyone else had a great Christmas as well.

Evan's New Friends

Rudy's Aunt Toni got these for a Christmas Gift and Evan was pretty fascinated with them.

He was hugging them and I caught him resting his head on Santa, it was so cute.

It was just so cute.

Christmas Eve

Our tradition on Christmas Eve is to go to my parents first and stay until around 7:30pm and then we head to Rudy's Aunts house for the rest of the evening.

Evan fell asleep in the car on the way to my parents house and he spend about 30-40 minutes crying once we got there and he did not want anyone to look at him, talk to him or touch him. It was great. He finally warmed up and the rest of the night went pretty well.

Cynthia and Mia are reading. Mia loves to read, she takes after her Auntie in that respect.

Cynthia is going to be 17 on Jan 7th, can you believe it?

Gabriel waiting for present opening time.

My Aunt Colleen brought goodie bags for the kids and this is Evan and Grandpa checking out his goodie bag.

4 of the 7 grandchildren, I tried to get a pic of all the kids but the younger ones were not cooperating.

And now the opening frenzy begins, Gabriel and Nathan got digital money jars that count the amount of money you put in the jars. Perfect gift for saving up for Legos or something.

Evan got this dinasour, he loves these little dinasours from fisher price, you just push a button and they go.

Gabriel got a lego, big surprise there!

Evan and Auntie.

Cynthia showing off the hat and sweatshirt that Grandma got her

Cynthia and Grandma

This is my Aunt colleen and my niece Sophia, Sophia is wearing the dress I made her for Christmas, isn't she adorable?

My dad the fisherman got this from my Aunt and Uncle, it is one of those talking trout.

New Bedding

Well, I am a little excited about the new bedding I got today. I put it on layaway so I guess it is a Christmas present to myself. I would say it is for Rudy and I but he could really care less about what is on the bed.

My walls were painted a light tan and a chocolate brown so I wanted to get something that matched it somewhat. I think this works out OK.

The sheet set that goes with it is decent also, I think it is 300 thread count which is much better than what comes is the standard bed in a bag set. This was not a bed in a bag though. Anyway, it is nice to have a new bedding set as the old one was looking pretty bad and had not held up very well even though it is only 3 years old. I am being smarter with this one and we are not using the comforter as a cover at night and when we lay down I fold it down to the end of the bed.

I spoke too soon

I thought we were out of the woods with Evan's illness yesterday but last night he vomitted again. He seems totally fine today so I don't know what is up with him. He sure is keeping me busy washing dirty clothes and towels and I also have to scrub the couch because that is where he was last night. Well, I have to get the house super clean because tomorrow is Christmas Eve and I always feel better when everything is clean for Christmas Day. Plus, I tell the kids that their rooms have to be clean in order for Santa to come to our house.

How to interpret pain in a non-verbal child

Since Evan started having seizures in January of 08, he frequently holds his head or cries and comes to me holding his head. He usually has what I assume to be a headache after his seizures, but he does this head holding or crying and pointing to or holding his head at any time during the day and it does not have to be related to a seizure at all. I am assuming he is having a headache or some kind of pain in his head, as when I ask him if his head hurts or if he has an owie he either shakes his head yes or points to his head. Well, now he has pointed to his chest area about 10 times when I asked if has an owie or even on his own he will point to right below his throat and kind of cry or moan.

So my instinct is to think he is having reflux or pain related to seizures. We just had a PH probe in August and his reflux is pretty mild and not enough to medicate although we have medicated in the past. But my gut tells me that I should have it checked out just in case, I mean it could be more than something small and he does not have the words or signs to tell me if he is having pain all the time or how it feels and we think he has a higher pain tolerance so it could be more pain but Evan is able to tolerate more.

We have an appt with his neurologist on January 7th so I am going to talk to him about it and I am thinking it would be good to do another MRI just to make sure there is nothing in his brain that is causing problems. I am pretty sure we are going to do another EEG to see how the new medication is working. I just hope he does not chalk it up to pain due to seizures. I really feel that we should look into it more in depth. Now about the pain in his chest area, what kind of testing would help with that a chest xray, ekg. I am also not sure sure if I should talk to the neuro about this or go to his pulmonologist?

I do not think these tests are uneccessary I just want to make sure nothing serious is going on with Evan since he not able to tell me himself. What would you all do in this situation?

Secret Santa Came to Visit

This is the second year that my yahoo group Cerebral Palsy moms has done a gift exchange. Last year we did not participate but this year we did. Evan got gifts from our friend in Michigan Daniel(he has the same brain malformation as Evan), we also bought the adaptive bike from them.

Evan got some great gifts, he is signing Thank You to Daniel in this pic.

Evan got a Wonderpets Coloring book, crayons, Dora and Diego Hot Wheels cars, another pack of hot wheels cars, mini M&M's, christmas playdoh, and a truck similar to one we already have that he likes to have when he wears his truck pajamas.

I was not too sure how he would do with the Memory game, we have not played it yet but as he was punching out the cards he came and brought two matching spiderman pieces. Is this kid smart or what?

As I was taking this pic I told Evan to say hi to Daniel and he waved with his cars in his hand. Evan often looks at Daniel's blog with me. I wish that Melanie and I could meet some day and get our boys together. They often do many of the same things, I know I have read about stuff Daniel does on her blog and think "oh, Evan does that or Evan did that. " Thanks again to the Sprangers for some great gifts.

Ramblings

Well, I was going to do a post about how Evan is sick and I am worried that he has pneumonia but he is better so that is good. He started with a fever on Saturday night and then had a fever yesterday and vomitting later in the day. He has been eating and drinking all day today and been fine, so I am guessing he just had some type of 24hr bug. He now has a junky cough so who knows this could turn into something more but I am happy that he should be healthy for Christmas. I am pretty excited for christmas and the stuff that we got the kids. It should be a great christmas for them this year, we were able to spend a little more than we have in the past couple years.

Visit with Santa

I thought I should follow up the pity party post with something happy and cheerful. Here are some pics of Evan at school visiting with Santa.

Evan and Carter, these two seem to have similar behaviors, they were both trying to get into their goodie bags yesterday and were crying and laying down on the floor during circle time. And they are both super cute.

See how Santa is intently listening to hear what Evan wants for Christmas. He was a great Santa.

Little miss Sophia just taking it all in

A group pic of the class with Santa.

Here is a pic of Sophia in the dress I made her, she is so cute.

Downside of the Holidays

So today was Evan's Christmas celebration at school and Santa came to visit. Each of the kids in his class got to sit on Santa's lap to tell him what they wanted for Christmas. Evan has discovered Santa this year and was very excited to go to sit on Santa's lap. Yesterday at that therapy place they had a play and Santa was there and Evan headed right on over to see Santa and he even got a candy cane.
So on to today, he went right up to Santa and sat on his lap and then Santa asked him what he wanted for Christmas so I had to tell Santa that Evan wanted a train from Thomas the Tank Engine. And of course Evan's disability put a damper on the event because my sweet boy could not tell Santa what he wanted for Christmas, it just made me so sad, I long to hear his voice and to know what is in his head. I was crying on the way home and mad at myself for being upset over this and then feeling like a failure because I need to be on anti-depressants to keep myself from staying in these down moods. Why can't I handle these situations, this is our life and these situations are going to be happening many times in the future.
We were sitting there and I saw his device and I thought I should put something on there for him to say, but Evan was the third kid to see Santa so I did not have time. But I am thinking of taking him to see the mall santa and then videotaping him using his talker to tell Santa what he wants for Christmas. I think we will use it on Christmas to surprise the grandparents.
Sometimes I get so weary of this life, of the fighting for services or equipment, the stares, comments etc. sometimes I wish we could just go back to Italy where we were supposed to be, instead of being in freakin' Holland where life just sucks sometimes. I have been getting Christmas cards from people and I feel like all the kids in the pics that are close to Evan's age, give or take 6 months, look so much older than him. Can your child look delayed? I better just stop now because this is turning into a pity party for Stacy.

Stupid Things Therapists say-Update

Well, I was at a particular therapy place for OT this week and last week and both days the therapist really upset me with some things he said about Evan. I am not thrilled with this therapy place anyway but I stay with them because they are now helping to pay for things such as part of his orthotics. So now on to what was said.
Last week was the 6 month review of Evan's treatment and the therapist was doing an eval on Evan. He asked Evan to put his shirt back on and they got the sleeves on and then he told Evan to pull his shirt down, well Evan saw a toy that he wanted so he crawled over to it and then his shirt just fell down on his own so then the therapist says "I see he still does not follow directions very well. " He is a 4 year old kid who saw something that was more interesting than pulling his shirt down, in addtion he is not cognitively age 4. You would think a therapist who works with special needs kids would get this. Then he goes on to tell me in so many words that if Evan were not going to be getting Botox that he would probably not be seeing him because there would be no point since he would probably not be able to work past the tightness in his left hand and arm. So he will just give up on this child at age 4. What the heck kind of therapist is this.
Well, today we went back for our weekly session and he starts talking about how he wants to see what kind of function he can get with the Botox on board. He then says that Evan's left hand is just going to be a gross assist meaning that it is just going to help hold paper or hold his jacket so he can zip up his coat etc. It has been said before that lefty will probably be a helper hand so I tend to agree with his assessment but the therapist seemed to be saying that if he does not see any or enough change with the botox then there will be no need to continue weekly therapy because Evan's hand will not improve anyway. I do not have a problem with a therapist speculating that left will only be a helper hand but us doing all we can to get as much functionality out of it as possible. You don't just give up, especially on a child at this age. It would be like the speech therapist or neurologist saying well Evan's brain is pretty messed up in his language area and he will probably not have a functional speech so just forget about teaching him sign, pecs or using a communication device.
I do not care if a child never progresses past the age of a 3 month old, no therapist should give up on them because of this, children with special needs take longer to meet milestones and there are plenty of kids who walk at age 11 or sit at age 6 or 7.
I know you are thinking why don't you just get a new therapist or leave. Well, we waited almost 2 years for OT to come available at this place so there is not another available therapist. I want to keep them around because they also pay for some portion of equipment or orthotics. I am just so torn because I really do not know if this therapy is even doing anything for Evan, especially with the therapist and his attitude towards Evan. We will have to see what happens after January 13th when Evan has his Botox injections.

So we got the reports for Evan's therapy evals for this particular place, it goes along with the 6 month evals. So anyway during the eval the therapist asked if Evan gets tired when he walks and how long can he walk before he gets tired. And I said about 10 minutes. So in the report is says"Mother reports that Evan can only walk 10 minutes before getting fatigued, yet while in clinic he did not stop moving the entire hour he was here and was able to walk to the other end of the school parking lot and back without any apparent problems." I think the whole conversation started when I was stating how he is starting to outgrow his wheelchair and I would be looking into getting a new one. Both the OT and PT say he does not need a wheelchair and so I was explaining that we use it in the community all the time and there are not many places that I go without it. There are plenty of times when we are at the store or out and he is walking around and then stops and puts him arms up so that I can hold him. Halloween would have been a perfect example of this as he had to get in the wagon after every house. This whole paragraph in the report makes it sound like I am a mom who just wants equipment or not telling the truth about my son. I am so tired of people who only see him once a week or once a month thinking they know all there is to know about him in a 30-60 minute time period. I am so close to just quitting this therapy place because it is adding undue stress on my life. He is already getting quality therapy from school. I just don't know what to do.

Christmas Card Picture

Most of our friends and family will be getting
this picture in the mail with our Christmas
card but I thought I would post it for others to see.
It was a rough road getting this picture, getting Gabriel
to smile and cooperate and Evan to look at the camera and not have
drool coming out of his mouth. I sent it over to snapfish and had them
printed out at Walgreens and now my dining room table has a pile of
Christmas cards that are addressed and ready for stamps which I am going
to get this afternoon, so the cards will go out in tomorrow's mail. I love this time
of year as each day I get a new card in the mail. I love seeing how kids have grown and
I even have a scrapbook that has pages dedicated to each family and has their christmas pictures and it shows how families and kids have grown. Hope everyone is doing well with their
christmas shopping etc.

I hate Seizures

Well, Evan had another seizure yesterday, this one was pretty mild for him. He was napping in his car seat and I was driving to my MIL's to go grocery shopping and I heard him do his gagging, and I thought "I hope he doesn't have a seizure in the car." Well we parked at the house and I was getting ready to make my shopping list while I waited for my MIL to get home from work, Evan was asleep so I did not want to get him out of the car. Well, scratch that plan because he started vomitting and I grabbed the closest thing with was my jacket. I did not notice any eye movements and he seemed mostly aware of what was going on so at first I did not think it was a seizure, but he was fine for the rest of the day and also fell asleep right after without complaining or anything, which is what he did on Thanksgiving, he did not cry about a headache as he has in the past. So needless to say I had to come home and wash his car seat cover, clothes and my jacket. Thank goodness my MIL had changes of clothes at her house. I also have to just add a big Thank you to Josie(my mil) for taking me shopping and to dinner after working 7 days this week. I know I am tired after a long day and yet she is always willing to do this for us.

So back to the seizure issue. I am frustrated that even with upping his meds and making sure we do not miss a dose( even though we normally don't) that he still had a seizure. I am glad it was a mild one. But the fact remains that it was still a seizure. I worried for so long that he would have them and then when started it was not too bad because he did not have them too often and they were not the Grand Mal seizures that I feared or did not involve any respiratory problems. Now that we have had a prolonged seizure I think that I can probably handle it if it happens again, as far as giving the diastat goes anyway. But I am more worried now that he only had 10 days in between seizures which is the least amount of time. I am sure he has had them more often but these are the ones that I notice and I think most of his activity happens when he is sleeping either waking up or going to sleep and not too mention the EEG showed the activity during sleep.
I don't think I will ever stop worrying about this issue. I remember before he had seizures I was so worried about them, that I just wanted him to start having them if that was supposed to happen so I could mark if off my list as something I dealt with. I am sure some special needs moms might understand this thinking. Now that I am dealing with them I feel just as unsure and scared as I did before. I wonder what this activity is doing to his brain and if it is impeding his development at all. We have a neurologist appt in January so hopefully we can do a repeat EEg and see if the medication is helping at all. I will have to say that he is finally sleeping through the night most nights and my next step is to get him in his own bed somehow.

Cynthia

Can't forget to brag about Cynthia. She got an academic award last night at school for having a 3.71 GPA in the first term of school. We are so proud of how well she has kept her grades up in Jr High and Highschool. She is doing very well, probably better than both me or her dad did in high school. She is planning on attending Cal State Bakersfield in the fall of 2010. I can't believe she will be graduating from highschool is a little more than a year.

Evan and Kindergarten

So when we had Evan's IEP the program specialist said that I should register Evan for Kindergarten in December so that he would be in the count just in case we decided that he should go to a regular education kindergarten. She talked about the inclusion specialist from Franklin Elementary coming to observe Evan sometime in 2009, and also the school psychologist will also be evaluating Evan. Our date for our next IEP is set to be by May 30, 2009. When I had Evan's teacher conference they talked about kindergarten and his special ed teacher and regular ed preschool teachers said they think that he will be ready for kindergarten and that I should send him to kindergarten with the understanding that he will probably repeat. His teacher is going to set up for me to visit some classrooms both in special education and regular ed classrooms. It is my opinion that Evan will not be ready for regular kindergarten next year, I just don't know how a cognitively impaired, non verbal, developmentally delayed child is going to function and benefit from being in a typical kindergarten class, even with an aide. I remember Gabriel's kindergarten class, those kids were so advanced socially etc. In his current class he is one of 5 special needs kids, how will it be when he will most likely be the only one. I know his teachers spend 4 days a week, 3hrs a day with him but I am still his mom and I think that I am still the one that knows what is best for him. I think a special ed kindergarten will be the best for him where he can be with other kids with similar issues as he has. Just where he will be on an even standing with his peers. It is ok for some to be ahead and some to be behind but in a typical kindergarten he will probably have 98% of the kids ahead of him if not all of the kids. We will see what happens.

Enjoy this pic of the boys watching Wall -E

Conversations with my son

Even though Evan cannot talk we still have conversations with each other, these conversations usually consist of him using a few signs, pointing or nodding his head yes or no and me asking questions and thinking in my head what would he be saying. For example we were sitting on the couch watching a show that I recorded for him called Horseland, I recorded it simply because it was about horses and I thought he would like it. So we played it and he was sitting on the couch and kept patting me on the shoulder and signing horse, he was so excited and I was thinking in my mind that he was saying "mommy, look at the all the horses, I love horsies." I would love to hear his voice and maybe someday I will hear him say Mommy. He does have a sound for me that he yells when he is looking for me, it sounds kind of like Ma, but it is definitley distinct for me. Evan is able to say vowels so everything sound similar.

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Justinich Look-alike Meter

We thought it would be fun to see how this worked with Rudy, Cynthia and I since we do not have a digital pic of her mom. Just shows you that this fun stuff is just that and not too accurate.

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