Friday, October 31, 2008

Flashback Friday

Happy Halloween!! Here is my little Monkey on his first Halloween :D

We are headed to Daddy's job this evening for a halloween party and trick or treating. Then we'll come home and maybe trick or treat around our cul de sac. Then bright and early tomorrow morning, we are hitting the road for Missouri!

Thursday, October 30, 2008

Sensory Integration Dysfunction

Also known as sensory integration disorder, sensory processing disorder, sensory intergrative dysfunction, sensory modulation disorder, or even dysfunction of sensory integration. I'll just call it SI dysfunction. This is what J is dealing with. Well I should say what the Johnson family is dealing with. Today was his first session with the speech-language therapist and I completed a sensory profile and was not surprised when his score showed that he was indeed experiencing some sensory issues, mainly proprioceptive and emotional. When I looked over the list I almost laughed b/c most (if not all) of the things listed were honestly normal toddler behavior, but the list also asked about developmental milestones, emotional reactions, and how everyday life is affected. J exhibits several sensory seeking behaviors such as stomping feet when walking, jumps or hops instead of walking, excessive banging of objects, loves rough play, frequently falls on floor intentionally, chews on shirts sleeves, and the main one that we've been dealing with and worried about...head banging and intentionally hurting himself. He also shows several emotional issues related to the dysfunction such as getting easily frustrated, often impulsive, functions best in small groups or individually, variable and quickly changing moods, prefers to play on the outside of a group just observing, and has difficulty making needs known amongst other things. It all goes hand in hand with the fact that J is not speaking, not eating, and does not cope well at all in loud and crowded places. It all makes sense to me now. We have more paperwork to fill out and hopefully soon an OT will be added to Jayden's weekly therapy sessions. We've decided to let his speech therapy take the place of his Monday morning storytime since he was not enjoying the crowded room much, and we may thr to go for the afternoon storytime to see if it's less crowded.

Now this all brings me back to something that has always been in the back of my mind since we filled out our intial adoption paperwork back in July 2006. We filled out an application for domestic infant adoption, which is simply adoption of an infant within the states. On the application was a section about special needs. The section asked if we would be willing to adopt a child with special needs and if so, to what degree would we accept. Alot went through our minds as we thought about that section. First of all, as first time parents, honestly, to what degree could we handle a special needs child? Are there any cases that we could handle more than others? We read and read and in the end we decided that as first time parents, we'd rather not adopt a special needs child. It's best to be honest with yourself no matter how bad you want to be parents, and we had been trying for over 2 yrs at that point. However, even after we turned in our application, that particular section stuck in my mind. Not all disabilities will present themselves at birth. Of course there are some that are obvious at birth such as downs syndrome, but there are several that won't present themselves at birth and will be found later on in life and can severely disable a child. I've always wondered, would an adoptive parent be devastated if they did not actually get the "healthy" or "normal" child they'd asked for? Would they in turn despise the child for not being perfect or "exactly what I'd hoped for"? Seriously, I've thought these things even before J was placed with us. Now I know the answer... J is not disabled by any means, but now we know that he does indeed have special needs and that we are being faced with an obstacle that we never expected. One that we were not prepared for. So what do we do?? I know what we do, we will love him b/c he is our son! We will continue to be his advocate and get him the help he needs to live a well rounded life and to be happy. We will work with the therapists to get him ready for school with as little stress as possible. We will follow his cues and make whatever sacrifices are necessary to keep him happy. We will do all of this b/c he is our son and we love him, no matter what special needs he has. So I can certainly understand the reasoning for that particular section on the adoption application, but we should always remember that God is in control and God has the PERFECT child for us and He knows what He is doing when He makes a family.

So right now, I'm reading the book "Raising the Sensory Smart Child" by Lindsey Biel and Nancy Peske. Nancy is the mother of a child with SI dysfunction and Lindsey is the OT that helped them to get through it. I'm only in chapter 2, but it has already helped me to better understand the dysfunction and to understand why J reacts to certain things the way that he does. I'm learning ways to help him to cope and I'm also finding that I have more patience with him, although I know I can always use 10 times more. It's certainly rough for us and although sometimes I just need a break from him, I couldn't imagine my life without him. Your prayers are welcome :)

Tonight is kid's night out at the park so we are going to dress J up in his Teddy Bear costume and let him have some safe fun. We'll only stay as long as he can tolerate it and then we'll head home. Here's his costume... I may even enter him in the costume contest!

Tuesday, October 28, 2008


My apologies for the lack of posts lately! We've had some busy days here and now we are preparing for our trip to Missouri this weekend. We won't be back until the end of next week. I'll make up for the lack in posting though, promise ;)

Tuesday, October 21, 2008

Early Intervention Evaluation

J was evaluated today for acceptance into the First Steps Early Intervention program. Daddy came home from work to be here to observe and they all pulled up to the house together. It was the case worker along with 4 therapists
and they were so good with J. The physical therapist got on the floor with J and took out a ball. He immediately showed them that he could kick a ball, throw a ball, run in circle, hop with both feet, and walk on his toes :) He put together a shapes puzzle, stacked some blocks, and drew a nice circle. The speech therapist was asking me what words we've heard him say and between Daddy and I we were able to come up with a list of 10 words, which put him at 18 months development. He said 3 of the 10 words during the eval, "Yay!" when he put the puzzle together, "Bibe" (five) when he ran over to give Daddy and I a high five, and "Byebye" when everyone left. The therapist took out a group of objects (rubber duck, car, baby doll, elmo, ball, and a cup) and asked him to name the objects by pointing at the object and asking what it was. He couldn't name them but he could pick a certain object out of the group when asked. So he knows what the objects are but he can't say the words. She showed him a flash card with objects on it and he just got really quiet. I have flashcards for him also, and he does the same thing to me. The therapists asked me how does he communicate with us at home and I told them that he can sign eat (which he only does in the morning when he wants breakfast) and he will grab his blankie when he's ready for bed, but other than that we follow his cues. When he's thristy, you will usually find him in the kitchen hanging off the fridge, or knocking on it. When he wants to read, he will go to his closet and get a book and bring it to us. When he wants to play he brings us a toy. When he wants to watch television he grabs the remote. This is how he communicates and when we ask him to say words he either gets really quiet or has a tantrum. So this also explained to us why he is such an angel at home but then completely melts down in public. His is always very irritable and clingy. That's b/c in public, he doesn't have things that he can use to communicate with us, so it's very frustrating to him. He is at an age where he understands so much and needs to be able to use words to communicate, but he cannot do that effectively. However, he had to test at a level of 17.25 months in order to be accepted into the program. He tested at 18 months, mainly b/c of the list of 10 words we provided and the fact that he understands and knows words, but cannot say them. This didn't surprise me at all. But they did say that from observing him, they do think that he could use the help of a speech therapist to get him talking, so they accepted him into the program. He will remain in the program for a year and will be seen by the speech therapist once a week for 45 minutes each time. She will work on language skills and possibly some oral motor skills to see if that will help him to hopefully eat better. And if that doesn't help he may get into the picky eaters program. I'm also going to mention the eating to his pedi at the 2 yr appt to see if he thinks J needs to go back on his reflux meds for a while.

So this eval certainly calmed my fears and I'm proud to say that my baby is on target for all areas except speech and cognitive development, but he's not too far behind in either and just needs a boost. I can't wait for him to start using his words and for his frustrations to be decreased. Yeah I know you are all probably saying, She'll very soon wish that he had never started talking b/c she won't be able to shut him up, but let me tell you...I cannot wait to have a little conversation with my boy and to hear him tell me "I love you".

Wednesday, October 15, 2008

Memphis Trip

So, our trip to Memphis was so nice, relaxing, and fun! We stayed in a little suite on the Navy base and we visited the Memphis Zoo, which is amazing, had some great BBQ at a famous place called Rendezvoux in the alley, and it's truely in an alley. I was startled when we walked past a guy sleeping on the sidewalk. I forgot that we were downtown. I thought it was a dead body :( We also went to the famous Lorraine Hotel, where Dr. Martin Luther King was murdered. It was so nice to be able to spend time with my hubby, away from all of the everyday stress in life. No work, no video games, no internet, just the three of us. And then when J fell asleep, just the two of us. Well needed break! Here are a few pictures from my p&s camera. I have more on my big camera, but I can tell you it will be a while before I get to those b/c I have two shoots coming up, one tomorrow and one Saturday.

J enjoyed playing hide and seek in the hotel. He's an excellent hider. We searched for hours ;)

The two HUMONGOUS knots on his head are simply mosquito bites...poor guy

Tuesday, October 14, 2008

Head, Shoulders, Knees and Toes

This seriously melts my heart. I've been singing this song to J for a while now, trying to help him to not only learn his body parts, but also to try and say them. Tonight, on the way home from Sam's, he was in the backseat babbling and we looked in the back seat and he was pointing to his knees and his feet. He continued to do this once we got home and even after his bath. Then just before bed he ran to the CD player and did it, so I knew what he wanted. I turned on the song and he actually waited for the song to start and did his own sweet little version of Head, shoulders, knees and toes. I love how he does knees and toes! LOL! Sorry he only does it twice and then has to give me a big hug and kiss, but listem closely...

did you hear him say Head??? He tried to say shoulders after that! The caseworker came over today to do paperwork and she agreed that J is delayed in his language skills, but seems to be advanced in everything else. She agrees that there is some sort of feeding issue causing the delay and the frustration he experiences daily...Oh yeah, he gave her a nice little preview of his frustration!! LOL! The caseworker will be back on Tuesday of next week with three therapists and J will be evaulated then for acceptance into the program.

Monday, October 13, 2008

Early Intervention

Tomorrow, a team of therapists will come over to start the evaluation to see if J is eligible for the EI program. He will be seen by an occupational therapist, a speech therapit, and a feeding therapist. I hope the feeding therapist comes armed with weapons b/c J will give her a good fight! He has to be 25% delayed in any area, such as social, cognitive, speech, feeding in order to get into the program. I believe he'll get in mainly for the feeding issues and then for speech. I really don't think he's socially delayed at all, but what do I know?? I'm just his mom! The lady told me I will know if he's accepted immediately after the evaluation and they will give me his results on all fronts. Tomorrow is our first meeting but I think it will be mostly paperwork and he probably won't be evaluated until our second visit. I am so happy they come to us though b/c it will be less stress for both of us. I will keep everyone posted.

I'll try to come back later to post about our awesome weekend in Memphis!

Thursday, October 9, 2008

See ya later!!

I'm packing up our bags, and after lunch, J and I are hitting the road to meet Daddy in Memphis. Daddy is so excited and already has plans lined up for us once we get there. Memphis zoo, BBQ, sightseeing!! Should be fun and the weather is really nice. We'll be back on Sunday...or maybe Monday b/c Daddy is off from work :D Have a great weekend everyone!

Tuesday, October 7, 2008

Pumpkin Patch

Saturday, we took J out to the Pumpkin patch to pick his pumpkin. This particular pumpkin patch was about 30 minutes away from home, but it was well worth the ride. Once we got there we got straight onto the hayride to ride through the farm and get to the pumpkin patch. On the way there, we saw some really cool sights. First we saw April, the Zedonk! She's a cross between a zebra and a donkey! LOL!

We rode past some regular donkeys who were really friendly and came up to the tractor for the kids to pet them. We also saw some goats, cows, and a pond FILLED with Mississippi catfish! It was really cool. Next we rode past some trees with little orange things growing on them.

We were told that these were pumpkin trees and that this is where they get the pumpkins for the pumpkin patch. I find that hard to believe, but I've seen stranger a zedonk!! LOL!

Finally we arrived at the pumpkin patch and I have to say that I was impressed with the variety of shapes and sizes of pumpkins available for the kids. Last year, we took J to the AG museum's "pumpkin patch" and the pumpkins were all tiny. J was unsure of the pumpkins at first.

But it didn't take him long to start his search for the perfect pumpkin.

Hey Mom I think I found one!!

Yep, I like this one!!

So we grabbed his pumpkin and attempted to get him to take a picture with it. This didn't go so well b/c he really wasn't feeling too good.

These next two pictures make me laugh b/c he was totally done with taking pictures and you can see it all in his face!! LOL! He asked me to pick him up, then turned to his daddy with the same look on his face!

We took him down and my friend found something to make him smile, even if only for a few minutes...

I was so proud of him for holding on like a big, strong boy! After that, we took him to a little straw maze.

Overall, we had a great time. Jayden fell asleep in the car 5 minutes into the ride home, and actually stayed asleep once we got home. We brought home 3 nice sized pumpkins and we'll carve them once we return from Memphis this weekend. Fun times!

Monday, October 6, 2008

Welcome to the Sick house!!

J is mean, er...sick, Daddy has a staph infection, and I am just STRESSED!! Daddy had a mysterious and very paiful bump show up on his stomach early last week. By Thursday, the pain was 10 times worse and unbearable for him. He thought it was a spider bite, I was almost certain it was a staph infection, which it is. The Dr prescribed him an antibiotic, but nothing is helping the pain. It gets worst each day and it will not feel better until the infection drains. It sucks and I feel so bad for him. I am also realizing just how much I've been missing his help lately. J started running fevers on Friday night. It would go up as high as 103 and then I could get it to stay at 100. As of tonight, he's been fever free for 24 hours, but he does have a little cold and he is not a happy camper. He's a MEAN camper!! LOL! He has been losing his little temper and just being plain naughty. I guess it's his way of showing that he is frustrated at his body b/c he is tired but he still wants to have fun. Well, can Mommy's do the same and not get looked at like they are crazy?? Because I am frustrated b/c I am tired and I want to have some ME TIME!! Instead, I've been doing everything for J, helping Daddy, keeping up with the house, and taking care of the dogs. Since Friday, I swear I've only had 1 meal a day and I have had no appetite. Saturday I had to remind myself to eat b/c I was just so busy taking care of everyone else. Yesterday I could hardly get out of bed and I stayed there until 11am. Daddy told me he was able to get up with J and feed him breakfast and that helped me to regroup. Today was pretty bad and then I found out that Daddy has to leave tomorrow to go to Memphis for the week. So I'm feeling like there is no end in sight. I was desperate for a few minutes to myself today and I think someone was praying for me today b/c J, who has been fighting naptime lately, went down for a 2 hour nap today with no fuss at all. I jumped online and started dream shopping for a new lens for my camera. Tonight, after I cooked, served dinner, got J bathed and ready for bed, cleaned the kitchen, and read bedtime stories, daddy came into the room and fed me a plan to make the best of a tough situation. He leaves tomorrow evening for Memphis. On Thursday, I'll drop our dogs off at the doggie hotel and J and I will drive to Memphis to meet Daddy. His assignment there is complete on Friday morning and we will spend the weekend in Memphis. A well needed family getaway. I think we all could use a change of scenery right now! And here's the icing on the cake... Daddy must have noticed me dream shopping earlier and asked about the lens I wanted for my camera. I showed it to him and he grabbed my mouse and put it in the cart and ordered me a new lens. He told me "Happy Columbus Day"!! LOL! Gosh I love him. Not b/c he buys me things (LOL! That sounds funny!) but b/c he shows me how much he appreciates the things I do for our family and he knows when I need a pick me up.

And since I never feel right leaving you with a post and no picture, here's my boy and the shirt say's it all ;)

Check back tomorrow for pictures from our trip to the pumpkin patch. Time for me to change Daddy's dressing!

Friday, October 3, 2008

Flashback Friday

It was about this time last year that J took his first steps, at only 10 months old!

Thursday, October 2, 2008

Support Shunt Research

STARS-kids strives to ensure a brighter future for shunted children. A shunt is the preferred treatment for hydrocephalus, a neurologic condition affecting 1 in 500 persons. Excess cerebrospinal fluid collects in the brain increasing intracranial pressure and compromising neurofunction. Shunt complications are common. Hydrocephalus is life-threatening. Research to create non-invasive treatment and find a cure is critically underfunded and absolutely necessary. Proceeds from the 2nd annual walk-a-thon on Oct. 25th (held in 3 locations: Grand Haven, MI; Detroit, MI; Miami, FL) will fund qualified research projects directly.

A dear friend of mine, Angie, is the mother of a very precious little one who has hydrocephalus. She has had a shunt since 2 days after birth. Angie states,

"Without a shunt to relieve the excess fluid off her brain, she would die. She had the shunt placed when she was just 2 days old. She has already had to have one revision (which requires brain surgery) when she was 2 years old. Shunt failure rates are extremely high and statistically speaking, Lil Bug will face many revisions throughout her life (although we pray against that!). Each revision exposes her to potential blood and brain infections and takes her away from school (and eventually work). As her mother I am extremely interested in assisting any way I can in raising funds for more research to be conducted. I want Lil Bugs future to be surgery free!!!"

So it's understandable that funding this research is very important to Angie and her family. She is working really hard to raise as much money as possible to suppurt the research fund. Now until Oct 24th, 100% of the proceeds from her etsy shop, Lucky Bug Boutique, will go to STARS (seeking techniques advancing research in shunts). If you haven't checked out her store before, she has some wonderful handmade items for kids. Infant carriers, bibs, and toddler pillows w/ pillow cases. So why not shop for a few things for the kids and support a good cause at the same time??

Good luck Angie!!