Here Chickie chickie chickie-AMENDED

With Easter being right around the corner we decided to have a little fun with some holiday type activity. Some steps turned out well, and well some turned out to be messy but fun. I'll let you figure out which was which!

Can't say we aren't sanitary...gotta use the rubber gloves! That is half the fun!!!

As you can see, Daniel was our taste tester. Actually he wasn't the only one, he was the only one I caught on camera!

If you can't tell these are suppose to be lil' chicks. Didn't turn out quite like they were supposed to but it was fun anyways.

Check tomorrow to see the only purpose a Peep really has in this world!

Amendment: I forgot to put the link to where we got the idea for the chick. Bakerella!
You didn't really think I was that crafty to figure these guys out by myself!

Grandma Melanie....Again!!

Chase & Mommy (4 hrs old)

Mommy, Daddy & Chase (10 minutes old)

Chase Daniel
(named after his Uncle Daniel!)
6 lbs 9 oz. and 19 1/2 inches long.

Better Late Than Never!

OK, so I'm a bad mom for not posting photos sooner of Daniel and Caitlin's birthday party from last week. Daniel turned a whopping 3 and Caitlin turned an "over the hill" age of 23!

As much as I didn't want to do the SpongeBob cake, we did because Daniel specifically picked it out all on his own. I tried with all my might to get him to pick ANYTHING else. I don't know about you people but I am so sick of SpongeBob! Anyways, I baked the cake and this year.............DADDY did the decorating! Kudos to Lonnie. Job well done! He is a man of many talents!
Caitlin on the only hand loves cupcakes, so Tori made Caitlin's cake this year. All I had to do was mix the colored frosting for both cakes and get the tubes ready, they did the rest! I Love it!
Daniel received some pretty cool gifts this year. As you already know he got the Childrite Seat! YEA!!! It is just the right height to put a breakfast tray (the kind when you have breakfast in bed...HINT HINT!) in front of him and he instantly has a little desk! I LOVE IT! Thank you Aunt Karrie, Uncle Vince, Dillon and Rocco. He also got a CD from Aunt Ann that has his name in all the songs....over 80 times! How sweet is that?!? And below you can see, Daniel got cars from Emmie, and also a race track! Don't know who was having more fun with it Daniel or Daddy?!!?

THEN......prepare yourselves. Daniel LOVES the Wonder Pets show, so Victoria decided to get Daniel a Guinea pig. This is like nothing you have ever seen before. This thing is HUGE. It is the ugliest thing I have ever seen (I'm not really fond of large rodents) but it has the best personality! It cracks me up. Meet.........Cacapoohie (they names it!) Scary isn't it?!
They say that owners generally start looking like their dogs, or that they pick dogs that resemble themselves. I think the same goes for Daniel and his pet...Look at the two photos below. See how the hair is similar?!!?! (Daniel's hair after a nap)
I had to take a picture of the Guinea pig to get an better view from above. Have you ever seen anything like it before?? The front end looks like your typical Guinea pig, the butt of it looks like someone stapled a wig to its butt! Eeewwwww!

Wiggles and a Big Surprise! **AMENDED**

We were very lucky and got to go see the Wiggles. Daniel loves the Wiggles. We were able to take Daniel's PT therapist and her daughter (who is a month younger than Daniel). During the whole show Daniel didn't make a peep, hardly a smile, but boy was he engrossed in the show. I wasn't sure he was diggin' it too much but towards the end I think he got use to all the noise, and the lighting changes! But all in all, a fun time had by all.

Then when we pull in our driveway at 8:30 last night, there is a big box sitting by our side door. WOOOOOOO I love boxes! I love packages of all sorts! But boo woo.....it wasn't for me!! But it was for Daniel and we got to open together!! What a wonderful surprise and a mystery too! Look what was inside!

Yep you got it!! The Childrite seat that we've been wanting. I have been following the other kids in our yahoo support groups that have them, and I've been wanting to get Daniel one. I knew he'd sit up and it would work awesome! Look at that! I love it, I was so excited I put him into it while he was half asleep from a long day. I couldn't wait until this morning to get him into it again!! It is absolutely PERFECT!!!

The Mystery - there was no card, no indication of who exactly its from! So, whoever you are.....Daniel is giving you many many big kisses (open mouth of course!) and hugs. I also say thank you thank you thank you. You are truly a very cool person!
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We are going to use the new seat when we are doing our "reading". Part of the IAHP program is teaching your child to read. I have read the books by Glenn Doman that are required for the program that we are determined to go to. I am starting to get Daniel use to parts of the program that I can start at home now. Part of that is the reading program. The books say that even special needs children with severe brain injuries can learn to read. We are only at the beginning but I can tell you Daniel gets a kick out of the "reading" sessions. And it only takes a few minutes each day. I am loving it. We will see what he retains, but he is definitely paying attention. He wants to do more and more, but I'm following the rules to the tee from the book!

Gotta run and get ready for therapy, just wanted to say THANK YOU to our mystery seat giver~
AMENDED: WE FOUND OUT WHO THE CHILDRITE BUMBO WAS FROM! AUNT KARRIE, UNCLE VINCE, DILLON & ROCCO.
THANK YOU THANK YOU THANK YOU!

We took it to therapy today (speech, pt and ot) they all loved it too!

Just Because It's Funny

Here is a funny little video of Daniel playing with his sisters.....all laughing and giggling. Then watch him when he figures out that the camera is on!

An emotional day for Mom....

Emotional Roller coaster

One minute we're up!!

The next we're down!!

Up!

Down!

UP: Today Daniel had his first EI (Early Intervention)at home session for the school year. I cannot tell you how nice it was to have a good experience. This year there is a new teacher (Mrs. Kim) who used to be the teacher for EI a few years back but left to be an at home mom with her kids. Well she is back and I am very glad. She seems very nice. Another change this year is that when they come for the home visit it is not just the teacher but it is also one of the therapist. Today's experience with the visit and using our equipment at home has me thinking that this year is going to be a very good experience with the school system.

DOWN: My mother, the kids grandmother, has been fighting cancer for 20+ years. This past December we were told that it was back. She has been very very ill lately, and we have been having a nurse come to stay the days with her and one of her children (myself and my brothers and sisters) have been staying the nights with her. Today we got a call that there is a bed available for her in a Hospice home (the UP: she will be getting the correct medical treatment by TRAINED people, and she will be kept comfortable. the DOWN: the realization that my mom probably won't be coming home again, and that the home she has had for the past 25+ years, is not going to be filled with her home cooking, her knitting). It is a very very sad thing to have to go through. And yes I understand it is part of life, and that many others have gone before. But what you seem to not understand is.......this is MY mom, this is not fair, and no one should be meant to suffer this way, and to lose their sense of security. We won't get started on this but I was brought up Catholic and I do believe there is a God, but what I have a hard time understanding is why he has to make someone like my mother (or anyone for that matter, that is a good person) suffer. Again I am not opening this can of worms......because I am very thankful to God for helping Daniel along the way......but again, why is it that the good ones have to fight, struggle and suffer?

UP: Daniel is doing so great in all of his therapies, and we have been very lucky in having good therapist along the way. I hear horror stories from other parents who say that their therapists don't interact well with their kids, or that they just seem to be there for the pay. We have been lucky, Daniel's therapist, while I am sure that they are there for the money too, but they truly love Daniel. Unfortunately we had to end one of our sessions this week, for a few reasons.
Here's the DOWN: Daniel had two different Speech Therapist. One working on feeding issues, the other working on Augmentative Speech. According to Insurances, you can only have ONE type therapist. So for now, I felt that getting Daniel the communication is the most important. Now mind you Daniel has been seeing Ms. Anna, (his feeding therapist) for about a year, and she has done an AWESOME job. so there is the second part of the DOWN: We had to stop feeding therapy so we won't be seeing Ms. Anna anymore. (Unless of course I can figure out a way to swing it!)
Another reason we had to lighten the load of therapies if truth must be know....I need to spend some more time with my mother before it is too late. I know its silly and you think big deal therapy was only 2 hours a week. Well those two hours, are going to be spend driving to, or talking on the phone, or just plain sitting with my mom. I need those two hours for a while. And then maybe we can get back to that. Very selfish perhaps on my part, but Daniel will also get the benefit of spending more time with his grandmother, that I hope and pray he will be able to remember when he gets older.

Quick Update

I do have a lot to update on as this was our first week back from Conductive Learning Center. If anyone from there is reading this......I wish you guys the best of luck in the school, it seemed really cool, and it was great to see everyone making strides. As I stated in prior blogging, you just have to mentally be ready to accept things and I don't think right now I am.

This won't be a long post as I still am trying to gather all my thoughts on what has happened in the past week with Daniel, family and relationships. But will post more on that later.
We have continued to give Daniel 1 tsp. of Omega 3-6-9 (liquid lemon fish oil) and whether it be just a huge coinkee-dink (coincidence) that he all of a sudden went from babbling a few times a week to A TON all day. And its like he is carrying on a conversation with you. He'll do his "Oyede oye, doooooo" and I'll respond with "Oh really now, ya don't say" and he'll go on with another line of jibber-jabber, stop and look at me like are you going to answer me? so I will respond again and this little "ping-pong" conversation goes on and on for a good five minutes. Hes trying to say something, and he is proud of himself too. Its cute because you can hear the inflection in his voice. So kudos to the yahoo apraxia support group that gave me the idea of fish oil.

On another note....my third daughter Brittany, oh my, is done with high school. She had her prom this past Friday night, and she was beautiful. I am so very proud of her. She will be leaving us in a few months to go to Central Michigan where she will start another part of her life. Not looking forward to that day.

And another note: My first daughter Caitlin, oh how she makes me feel so old! She is looking into buying her own house. UUGH. She is a wonderful preschool teacher, and during the summer a perfect nanny.

And another note: My second daughter- Alexandra......talk about making me feel old........like Grandma old. Enough said! Will update more in a few months on this topic.

And then there is my baby girl Victoria- only a few days left of her "junior high years" and she is on to high school. Where she is going to be in honors classes up the ya zoo.......Good job Tori! Where did my baby girl go?

Get better Uncle Steve

Uncle Steve went into the hospital this past Friday to have a knee replacement and ended up getting sick. Had a couple of seizures. He hasn't had seizures since high school (and YES that was a LONG time ago). So please put Uncle Steve on your prayer list for him to hurry up and get better! All our Hugs and Kisses are sent to him. And even a bigger bummer is he had to spend Easter in the Hospital!

February Entries

Feb 28

HAPPY BIRTHDAY
MS. CAROL
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Feb 22 New Way Bar Fundraiser
Where to begin, it’s been 5 days since our first fund raising event for Daniel and I am still flabbergasted at how many people opened their hearts, wished us well, and gave their all to make his event successful.

Let me start by saying, Thank you to each and every person who gave their time in selling tickets for the door prizes, the 50/50 raffle, the Pistons raffle, the grab boxes, and the tin can raffles. We had tons of different drawings, and EVERYONE was involved. It was very heart warming to see The New Way Bar in Ferndale filled with people. Many people that we might not have known directly, but were friends of a family member, or a co-worker, or someone who just heard about it through the grapevine. Yes I come from a large family, and many of them where there, but they brought their friends and they passed the word.
Daniel came for a brief time at the beginning of the benefit but we opted to have him leave with his favorite Aunt Ann because of the smoke and the loud music. So Daniel got to spend the day with Auntie Ann and some time with Grandma Tamm at church and home. From my understanding he was a very good little boy!
Now let me get into details of the fundraiser…….we had Aunt Jan selling tickets and Aunt Cathy gave her a break, along with sisters Brittany and Caitlin collecting for the 50/50. Sisters Victoria and Alexandra distributed the grab boxes (which were a hit with the younger crowd!) Cousin Ronda sat at the door to collect and give out door prize tickets, given breaks by Uncle John. I am sure there were many others that helped out too, but I was (and so was Lonnie) so scatter-brained by being introduced to people and trying to talk to people (which we were never able to stand in one place for more than 5 minutes! Sorry to the people who we missed and weren’t able to talk to for long or at all!) Entertainment-Well we had this wonderful man (who I didn’t even know prior) volunteer to come and do the karaoke for us! His name is Mike Dreslin, and he traveled far to come help us out. Many people were shy about getting up and singing, but there were some that enjoyed and did really well!! Like Cousin Bryan, and Uncle Tommy, who both did great. Then there were various people who brought their own equipment and played guitar and sang. Lonnie even got up there with his friend Doug and did a few songs…….I just LOVE when Lonnie plays, gets my heart going pitter patter!
We called 3-4 names ever hour for door prizes for 6 hours, that’s a lot of door prizes! Then we had the tin can raffles which were a huge success. There were about 30 different things you could put your tickets into to win. Among them were gift certificates and gift baskets, afghan (made by Grandma Tamm), hair products from various Salons in Royal Oak , plus a big bag of goodies for someone from head to toe from Aunt Aimee! Gosh so many people helped out by selling tickets, collecting donations (Harley, Uncle Tommy, Bryan……Caitlin, Karrie, Marie, Uncle Greg, Uncle Steve, Uncle James & Aunt Cathy …..and numerous other people!) There was Uncle Tommy’s girlfriend, Lisa Phipps, who brought tons of food, pizza, ribs, salads, ham roll ups (which Tori and Brittany ate!!) chicken wings. So many things. Then Tina from the bar got more pizzas at the end of the night. Everyone who helped set up…….Ronda, Jamie, Jason, Bryan, John, Jan, Caitlin, Alex, Brittany and Tori for watching Daniel!
Yes I’m rambling, but there are sooooo many people to thank. Gosh all the companies who donated raffle items off. Those where a great hit, and the silent auction items, from the signed jerseys to the hockey tickets and hockey puck, and the Pistons tickets! WOW, all I can say is WOW. And also thank you to the many people who got in on the door prize and pistons raffle but weren’t able to make it. Wow, wow, wow. Oh! and the waitstaff/bartenders donated half of their tips throughout the night also!
Now, to write and mail all the thank yous! And if I forgot someone, please accept my apologies
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February 18

Right now, All I can say is WOW.......I didn't realize how many people you can shove in a little place like that!!!
and WOW........how many people are so giving!
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around
and everyone there, did just that......they have helped Daniel greatly.
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February 17

FUND RAISER TODAY! THE NEW WAY BAR IN FERNDALE. FROM 2 P.M. TO 9 P.M.
BE THERE OR BE SQUARE!!! COME JOIN THE FUN......MUSIC, SINGING, TONS OF PRIZES AND RAFFLES!
iF YOU'RE IN THE NEIGHBORHOOD, STOP IN AND SEE US!
AND DON'T FORGET TO SAY
HAPPY BIRTHDAY TO DADDY
( You can call him Lonnie!)
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February 12 ONE YEAR SEIZURE FREE
ONE YEAR SEIZURE FREE!!!
Yeah!!! We made it. Exactly one year seizure free! This is HUGE!!!! We were so excited by this we made Daniel his own blueberry muffin today! Yummy! That was our celebration!
Yes we can finally say we made it through this year, but there is always the very very strong chance Daniel will have seizures again. Different types, a different severity, Daniel will always have the high potential to have seizures. It is just awesome that the medication he is on has done a wonderful job so far!!

Unfortunately soon he will have to be taken off this medication because of the possible side effects. Then we will have to find another med to hopefully stop any break through seizures. It was a huge thing to get seizure control with the Infantile Spasms. Obviously the more spasms you have the more of a disability you will potentially have. With your brain seizing so much you don't have the time to learn and the damage to the brain is higher. We were very fortunate to only have to be on one anti-seizure medication at a time. Many people with epilepsy are on multiple seizure medications and STILL don't gain seizure control. The type of epilepsy the Daniel has, seizure control is critical to everything else. So .......Thank you God for letting this stuff work.

Wednesday we will be going to have Daniel's teeth fixed, he will be given a sedative to relax him and they will quickly do the work. I am hoping because it will be happening at "nap time" that the medicine will make him fall asleep and he won't be awake at all. Otherwise I imagine it will be a very traumatic experience for me ( ) I don't handle these appointments very well. I hate seeing him have things done to him that scare him, which he doesn't understand. Then Wednesday afternoon we have an appointment with one of my favorite doctors. Dr. Chugani, I always come away from his office feeling ok with what is going on. He has a way of making things "not so bad". Although it could be different this time as I have a lot of questions to ask him about alternative methods of therapies. Conductive learning, Euro-peds, Hyperbaric Oxygen, stem cell.....is Daniel technically classified as cerebral palsy? So he have dyspraxia, neuro-motor disorder, muscle disorder? Some of the things that are going on with Daniel (the spasicity in his arms) do not fall under the diagnosis of CBPS; they are not controlled by the part of his brain that is the perisylvian area. So does that mean that the spasticity is from the IS? Or is it because the Polymicrogryia is on more that the perisylvian area of the brain? And....further more does the PET scan that Dr. Chugani does, does that tell WHICH parts of the brain are working and which are not? And if a certain part isn't working can we train another part of his brain to compensate for the section that isn't working? Would the stem cell therapy that isn't legal in the help him with his arms and the movements, strength and muscles in his upper body? There are studies that show that HBOT helps children with CP, well Daniel mimics CP....why wouldn't it help him? Thing that stinks about HBOT if it did help him wouldn't be covered by insurance because.......it’s NOT proven.... Well I could go on and on about this stuff.......I have read just about everything that I can find (and understand) on the internet. We are Daniel's only advocates, and we have to make sure we are doing everything that we can for him. And damned if I'm not trying to understand all this medical stuff.
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February 8
Daniel got his medical alert bracelet this week. People think..well why does he need one of these little things. Here is my thought...as much as he is in as a passenger, if we were to (god forbid) get into an accident and I wasn't able to care for him and got hurt. The paramedics would be able to tell right by his bracelet what is wrong and his emergency contact information. It was a wonderful idea and a great Christmas gift from his sister Caitlin.
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February 7
Having a heck of a time keeping Daniel healthy. It is either a cold with sinus issues, or teething.....both of which is making for a not very happy little boy who is, I believe, on strike from therapy sessions. He refuses to do ANYTHING this past week
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February 6
YES! it is finally in! We have our very owe Rifton Gait trainer!!!!
I am sooo excited, maybe with having one here and us getting Daniel in it more than once a week, we will be able to teach him to scoot around the house. Give his little guy some mobility!!!
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February 5
Let’s see, we didn’t have a real eventful weekend but never the less it was relaxing. Daniel has been playing with blocks a lot lately. He isn’t stacking them, but I do the stacking and he does the knocking them over. Its very cute, he’ll knock them down and look at me like, “Hey did you see that? I knocked those down all by myself!” He is so cute! The kid definitely has personality. This is what keeps me going. Brings me back to the here and now, instead of wishing a had a magic crystal ball that I could get a glimpse of who or what Daniel will be 13 years from now. I watch him a lot, and wonder what his speaking voice will be like when and if he starts to use it, if he’ll be able to play with the other kids his age, what will he look like, will he end up looking different from the other kids because of the lack of use of his limbs? Will he be left handed or right handed? These things nag at me continuously. Will he ever feed himself, speak words, take his first step unassisted? Will he be invited to birthday parties? How about, will he eat solid foods?
It is very painful when the reality hits, that Daniel, no matter how hard I want him to do the things the other children his age are doing, he can’t, and he won’t for now. I see other children clinging to their parents hands as they walk around the room, or taking a snack and putting it in their mouth and eating it. And these little things tear at my heart, because Daniel can’t do them. I am waiting for the day when he realizes that he isn’t like everyone else, and how am I going to handle that? How am or will I be able to explain to him, that God made him differently then other boys and girls. Will I be able to make him understand that he is different because he is special. He has something MORE than those other kids who are considered “normal” His personality shines. He can touch lives, and make people realize what they have shouldn’t be taken for granted. He works hard for what he has. All these feelings for Daniel can some times be very overwhelming. You don’t realize until you have a child that has issues, how lucky you are. We take things for granted, we take the things that are suppose to just normally happen for granted. The first steps, the first words, the first smiles, the first days of school, the first school dance. These things aren’t happening for Daniel and it is so very, very unfair. I look at my little boy, and think……God why did you have to make Daniel be “special”? Why couldn’t you just let him be a “normal” little boy? What did he do? What did I do? Why are you making him suffer for something that he couldn’t have possibly done? Look at him damn it………he doesn’t deserve this crap. He doesn’t deserve to have to work his little butt off everyday and still NOT be able to do what a 18 month old should do. WHY ARE YOU DOING THIS?? I apologize if I offended anyone in writing this. I do believe there is a God, I just don’t always understand why he chooses to do the things he chooses for some people. (ex: Daniel and his Grandma). I know there are millions of people who are worse off, or have had tragedies in their lives. I apologize if I seem negative about Daniel. I am not. I love him with all my heart and all I want is the best for him and I will spend the rest of my life doing WHATEVER it is I need to do for him. This is reality, this is the reality for Daniel….and I try to remain positive and keep looking for additional ways to help him……it is all going to be a very very hard road, but it will be one that he will never travel alone because I won’t let him. I will be standing next to him when they are pushing him to hold his head up, or push with his arms. I will be his voice, I will be his guide, and I will be strong for Daniel……and he will know…..it is all going to be ok
Ok I’m done ranting and raving. Its just one of those days
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