Sunday, March 29, 2009

The bus... and other fun stuff

Ty if finally liking school. He has been happy as a clam and hates to get off the bus. We are looking at sending him to the foundation for blind children next year for preschool and at least looking into the summer program there for him.

This is the park by our house. He is doing so well. I can't wait to get his new braces on his feet to get it working better. I know it will be a fight.

We were outside playing before the bus came. ( yes I take my camera) and I asked him if he could hear the bus. He turned around and did that with his ear. He was so funny.

Thank you ladies for the wonderful support system. Things are going well for us right now. I am looking for some summer programs for him. I was also wondering if others have any in depth speech programs. Where do you get more information on dysphagia? I am wondering if we have something else going on.

Thanks again ladies... love ya... and love your kids

Adjusting to life

We have one Happy Boy!!!!

It has been one of those days today. I ended up home from church with my oldest son who was not feeling well. I have been so busy and overwhelmed this week that this was the first time I had a day with nothing important to do. I spent a lot of today thinking and contemplating the turn of events that have gone on in our house this past week.

I am so incredibily thankful for Josh's feeding tube. I know that might sound weird, but I am. He has been struggling with getting enough nutrition since last october. His decline in health has been so gradual that there wasn't any one significant event to let me know that things had gotten bad. Now that he has been doing better I have seen some amazing changes. Before his feeding tube was placed, he was taking 3 naps a day at least. He is 22 months old on wednesday, that is not really normal. He wasn't as talkative, energetic or happy either. By the 2nd full day of tube feedings, he was only taking 1 nap a day, running all over our house all the time, and soo happy-go-lucky. I know that getting a bowel clean-out helped as well. It has been so wonderful to see the changes in our little Josh.

Now I am just adjusting to a new way of life. Doing tube feedings every 2 hours, dealing with Home Health Care, learning how to do things I never imagined doing. But it's all worth it to see him doing so well in just a weeks time. He is such a wonderful and amazing child and I truly feel lucky to be his mom. He is so full of love and excitement. I am just glad that once again I was able to see a silver lining in something that could have been much worse.

Just a thought

I had the privilage to share my testimony today at church. While I was talking about my up and down trials of being a special needs mom, some thing happened. I realized the trials that we go through are not because we are being punished or that we did something wrong. The trials that we are given are opertunities to learn. Man have I learned a lot in the past 17 months! I strongly feel that God loves us so much, that he wants us to grow more and more. I check this blog everyday and I am always seeing us woman growing, teaching and learning. That is what this is about. Our children have been given something that we as mothers can not take away or fix. Rather we as mothers are able to teach those around us how to understand and except those who are different. What a wonderful gift!

Saturday, March 28, 2009

M.K. put on her sock all by herself for the first time!!!! :) 

Friday, March 27, 2009


Hi Darling Moms.......I hope all is well. Normally I try to post positive, upbeat words here....I feel it of uppermost importance to do so. Most of the time, God has blessed me with abilities, friends, family, creation to remind me to view the glass half full. But this time around, your old gardener is feeling stooped over and tired. The rain showers have come and I've noted exquisite tulips and other gorgeous blossoms from bulbs, annuals and trees signaling spring is nearing for most of us. Easter is just weeks away and the perfect time to ponder more reflectively upon new birth. Wash away old; bring in new. Let go of old; grab onto greater and more peaceful existence. I've been visualizing and pondering upon the phrase Steel Magnolias.......we often see each other as a steel magnolia. Sally Field, Julia Roberts, Dolly Parton......the exceptional cast of the movie where each is different, but each is strong to hold the others. (Did you know there is a facebook quiz about which character you are from the movie?....I was Dolly Parton's Truvy.....enough said...I can't sing, but other traits exist...) I have expressed on facebook the last several days that I've felt like a wilted magnolia......many days I feel there is absolutely no steel component in my being. Artificial flowers can be bent this way and that way from a flexible wire base and a strong rubber coating for resilience. They often last a lot longer than the real thing. They don't wilt really unless the sun and heat have been relentless, or the wind furious......eventually though they fade in brilliance. They often get forgotten or they pick up dust, go out of style and eventually may be thrown away and replaced with new. The point is.......I don't know which flower I am or what the care needs are just now. I love the thought of being the 'steel magnolia'.......but it is not always realistic. I love tending tulips.......very seldom does a tulip go unnoticed by me; growing, living and breathing in a flower garden; artificial; printed on paper or snapped in a photo.........or yet, importantly, living in human form in our earthly midst. I have a radar so to say, for tulips. They are much more fragile, yet they are very strong........they have to push through a lot of dirt to bloom where they are planted. I suppose in reality I am a mixture......maybe I could be optimistic and dare I say 'prideful' and consider myself a hybrid? Now that is a thought to ponder.......throw in some steel to keep me strong, some wire & rubber coating (underwires?), for flexibility and stamina, (defense against gravity) combined with the vulnerability and short lived splendor
of the tulip......I'm rambling like weeds overtaking beauty. The last several weeks have felt like weeds have been increasing and infesting my home garden. The individual need that Clay has to be with his peers, stretch out and finally bloom more completely. The individual need for me to break out some dissecting roots to be with others. The need to feel renewed, to repot and be freshened up, given new opportunities as a couple in springtime. The need, the need, the need. The want, the want, the want. When and how does the gardener know it is time to split and replant? Where does the gardener replant? Which other plants need to be included in a new garden plot? How does the larger landscape pull together? Who will help tend a larger landscape? Who will provide the all inclusive needs for a new landscape? Who will anticipate and encourage the garden to grow and become the most beautiful landscape human form has imagined? So, now that Clay has quieted from a Goody powder and a small dose of liquid Valium, flushed down the G-tube, I imagine this as my online conversation with God. You who garden with me and alongside me are my guardian angels; Clay's guardian angels. We bloom where we are planted in different plots with different requirements, yet we are all part of God's exquisite landscape. We turn to each other when we wilt, when we wither, when we become threatened. We lean upon each other just as tulips lean towards the same direction in many plantings and situations. We remind and encourage each other to keep pushing through the dirt......often dirt that feels overloaded with manure. But I pray that the very manure that we keep finding ourselves buried under is the same manure that keeps us nourished and strong and indeed, keeps us viable in nature. Sometimes it gets really smelly and we want to pass out because it is the easiest way to withstand.......sometimes like now, I just feel in between and severely wilted; not quite sure if I'll let weeds of insecurities, doubts, and lack of care (workable, feasible provisions) knock me flat and covered over in the dirt to be stumped upon and overtaken as dead. I'm tired of nutrient void, stinky manure; I'm tired of feeling stumped upon, I'm tired of weeds feeling they can grab hold and thrive, then slowly suck the possibilities and the life out of more fragile, yet beautiful potential. For now, I'll fight to remain simply wilted until God will nudge (quietly, loudly) you, me (Clay) and other fragile creation to push through, stand tall again and bloom like never before.

Monday, March 23, 2009

Speech therapy is a drag

Speech is my least favorite therapy.  I hate the fact that I can't make my son talk.  I know I couldn't "make" him crawl or walk or anything else but I felt that I could take him through the steps over and over until he understood and did it by himself.  But speech?...*sigh*  speech.... I can't even "make" him go through the steps.  I have no control and it doesn't seem to get through to him what I am doing.  I am so antsy for him to communicate effectively.  I literally dream of him talking, of him saying "I love you Mom" then I wake up and cry myself back to sleep.  

Don't get me wrong, he is making progress, big progress.  He will mimic certain sounds.  If I say Woo-hoo!  He comes back with oo-oooo!  And if I change to Aahhhh!  He will change to Aahhh!  If he doesn't all I have to do is remind him what I said and you can see the wheels turn and he changes his noise to the correct one.  He is understanding!  He is hearing the differences!  He just can't make it all work together.  

Most days I feel like it is all I think about.  I cry about it at least once a week.  I want everything for JT but I just don't have control of this.  No matter how hard I try I can't force the words out.  His younger cousins are passing him up completely now.  They did with crawling and walking and now talking.  It tears me apart.  

This has been the first thing I am unsure of.  I knew everything else would come.  I even knew about when he was getting close to doing it.  I don't feel like we are close.  I don't even know if I see it on the horizon.  I am beat.  

Saturday, March 21, 2009

Our new look.....

My son has a new look.... he is sporting a feeding tube now. I think is most cases this isn't the best sign possible, but for us we have welcomed it. I didn't realize until last night/early this am (whichever way you want to look at it) that his lack of eating and drinking had taken such a toll on me. The decision was made from the PCMC feeding clinic yesterday to finally take some action with his lack of intake and his constipation problem. So we went to the ER last night and had a NG tube put it, and a bowel cleanout. For the first time in a week I feel sooo much better. I know he is going to get his fluids now and we can work on the fear of drinking he has without getting to the point of hospitalization. So we'll go through the weekend and then on monday find out what else we need to do. Thank goodness for a wonderful OT with PCMC that was not comfortable with his nutrition at this point and got the ball rolling.

Friday, March 20, 2009

Happy Springtime, Moms

I can't believe that Spring has arrived. I can't believe many more than twenty of them have come and gone as head gardener for my family. Reading the last post and it's comments has made me think that this is the time to bask in newness. Now is time for progress. It is an opportunity to look for positives amidst our frequent 'negatives'......riding that roller coaster life we all live. It does my heart good to read your posts; especially the ones that are filled with joy. I get little glimpses into your lives and feel pride for young women who matter much. You may not understand it now, but each of you has already planted many a seed. You are good gardeners to fragile, difficult to tend, seedlings. Keep tending. Spring is a great time to watch color and life return. Life for the mamas who often feel drained and alone; life for our babies, because roots are so strong. Growth goes in all directions; sometimes some shoots are stronger than others; sometimes we hesitantly need to pinch in one area to allow a stronger, more viable direction to unfold. New perspectives that are part of a beautiful landscape, filled with tulips......each and every one special and unique. What a wonderful garden!

I'm still here

I thought I'd just post to let you all know that I am still here. Things have been going really well for us lately, so I haven't had much that I've felt like posting about. I do read every post you guys make, and I love to comment. So......I've been around.

Like I said, Mason is doing really well. He is growing up so much. He shocked me the other night when I decided to quiz him a little bit on what he could and could not do. It surprised me to find out that he is learning to read. He is not a fluent reader, but he can sound words out. I was so proud of him---I just kept writing more and more words, and he was able to read the majority of them. He's my smart little stinker! He is also learning to play the piano, and he can play "Twinkle Twinkle Little Star". Hopefully he will continue to enjoy that for the rest of his life. He is very anxiously awaiting his 5th birthday and Easter. Since his birthday is the day before Easter, he seems to think that the Easter Bunny will be coming early and will be hiding his gifts. We'll see about that............He has made so much progress lately. I can't even believe he is the same kid that I remember him being two years ago. He still has his motor delays, but he is working so hard to improve, and it is really showing. He has become a pro at playing MarioKart on the Wii. When he began playing a couple months ago he wasn't even able to finish a course. Then he moved up to finishing, but finishing in 12th place. Now....he comes in first place a lot of the time! He could beat me any day, and that's no lie. I just love to see him do things and enjoy things that typical kids his age do. We're still working on riding a bike, though he is gaining enough strength and balance to swing on a regular swing now. He doesn't quite have the coordination right now, but I'm thinking this summer he'll get it. It gives me hope that the gap will close and he will fit in to a regular classroom---not just fit in, but succeed as well. I'm just so proud of him, and I love him so much!

One happy mama

I just wanted to brag on my little man! after months and months of PT and OT he finally crawled! Yep! His bum was in the air and his knees were brought together. Right hand, left knee, left knee right hand. this was something we have been waiting for for a long time. So no he is not all over the house yet, but he can do up to three crawls before he tires out and takes a break. I am so HAPPY!

When Prematurity Comes Back to Bite, It Bites Hard!

Marshall was a 33 weeker. That doesn't seem too premature to me. Yet, every time we have feeding therapy, it seems I'm finding out new things that are "wrong" with him. I'm not at all upset at the therapists for telling me this. I'm actually very glad!! So far since starting feeding therapy with the SLP, we have found out Marshall has: Reflux (pretty bad), a significant fine motor delay, oral motor delay, dysphagia, hypotonia in his jaw, and now, yesterday I'm told he has weakness in his trunk. The good thing is, look at how amazing my son is!! He has compensated for these things so well and found ways to work around them. I've got to help him get better at his "problem areas" so he won't have to work so hard to compensate for things anymore. I'm just a little overwelmed though.

Also, we had a great visit with Marshall's counselor. She drew him an "angry thermometer". We talked about different things that make him mad and she asked him how mad they make him. They determined that if the thermometer is at the bottom, he's not at all mad. If it goes up a little, he says it's to the top of his head mad, the next line is to the ceiling mad, then it goes to to the top of the mountain mad, then to the sky mad, then to space mad, to Pluto mad, then SUPER MAD all the way up to Eris. He doesn't talk much when you ask him questions. He can talk to you for hours if he talks about what HE wants to talk about but if you try to direct the conversation, he quits talking right away.

Tuesday, March 17, 2009

Another question on DAFO's

It seems like all of us new DAFO mom's have questions lately! I just am wondering from you seasoned DAFO mom's what you do during the summer. I am attempting to get a list going and some stuff bought for Josh and have been trying to figure out what to do. Josh will probably only need his DAFO's until the end of the summer (knock on wood) but we still have the hot part of the year to go through. So do you use sneakers all year, or something cooler during the summer. I know that every night when I take Josh's DAFO's off, his feet are sooo sweaty and hot. I can't imagine how bad this will be during 95* weather. So what are some things you have done? Do sandels work, or do you stick with shoes? Any other advice you have would be greatly appreciated!

Sunday, March 15, 2009

I'm Still Alive

Just incredibly stressed and busy. Marshall has been in a downward spiral and I don't see it getting better soon. For more information, you can read a long post I just did on my personal blog-
The Bucklein Bunch.

Saturday, March 14, 2009

How do you all do it?

So I am totally stressed about this coming fall.  I will be going back to Weber to become an occupational therapist.  JT will turn 3 and he will be going to the Early Intervention Preschool.  He still refuses to stay at any nursery or daycare type place without me.  How will he do with preschool?  How will I go to school?  How can I make sure he gets all the therapy at home he needs with all my homework and housework?  ARGH!  I just feel so worried about the whole thing.  I know we will figure it out somehow but it feels like such an incredible task.  Then there is also the regular worry about going back to school.  How do I pay for it?  How will I do going back after 3 years?  *sigh* Life changes are scary for me I think.

Experienced DAFO moms

Summer is coming up and I am a little worried.  At the end of the day JT's leg is so hot and sweaty and it isn't even hot out yet.  Is there a better sock to use that will keep him cool?  

Monday, March 9, 2009

The toddlehood adventures I thought I wouldn't have

Ty had a blast this last week being as busy as we could be. We kept going and going. He is back to normal and he is even better than normal on some things. I couldn't be happier. (Well I could, but that would include way to much sleep and a massage on a beach)

So these are a few of our favorite things this week:
Swinging with dad at a new park we found

It gives him the best workout. It makes him tired

Running in the street. He even figured out the dips on the gutter and made it through them without tumbling over.

Working on the rocks is hard work for him. He got all the way over to where he wanted and he was so proud. Those big rocks are way better to throw.

Overall things are going so much better. He is doing better in signing and we are so hoping that soon we will have a speech break through. He is a great kid. I feel super lucky. It seems when the bad outweighs the good sometimes it gets to much. I know that we are lucky with what we do deal with. I am happy with our issues. I can deal. For now.
We have 2 weeks off for spring break coming up and I am hoping for a great 2 weeks. I am sure I will be ready for him to go back to school. Guess we pull out all stops.

Anyone want to play in the sun!?!!

Sunday, March 8, 2009

Sleeples Nights

I guess the stimulant was a bad idea. The first night after he had taken it, he woke up about every 2 hrs. Last night he just couldn't stop fidgeting. I think it was after 11pm when my husband told me to go sleep on the couch and he would get Marhsall to sleep. He said he put his hand on Marshall's chest and his little heart was just going wild. Unfortunately, our doctor isn't on again until Tuesday. I think it's time to try another plan. I think for now I'll take him off the stimulant and try working on giving him appropriate things to chew and getting enough movement in. It doesn't really help. He still fights with his brother like crazy and he licks everyone and everything. We are exhausted. That's why my name on here is Anita Nap..becuase I'm always so tired.

Friday, March 6, 2009

Don't You Just Wish You Could Buy Toys?

I would love to buy Marshall toys!! Instead, I have to buy him chewy tubes, and left handed utensils, a scooper bowl and scooper spoon. I wish I had money to get him a nice trampoline with handle but he's doing OK on the one we have. I wish I had the money to buy him another action figure guy but he's actually really happy to play Disney's Toontown Online so I let him.

He did not want to go to school today. He asked me to send a note saying he can't go outside so school will be over faster. I told him it's OK for him to not like school. It's even OK for him to not get a sticker. I will still love him and he will still get to play Toontown. Today is day one of the stimulant. I'll let you know how it goes. Wish us luck..

Thursday, March 5, 2009

Just one of those days....

Today was one of those days for me. It was a very typical day, doing very typical normal things for me. I have a hard time finding the best possible time to go grocery shopping without taking the kids and it ending up being a circus act. So I find myself going to the store more and more after bedtime. I actually like going that late, it is usually very quiet and I can get the shopping done in record time.

So tonight was one of those nights. I made dinner, did dishes, got all three kids in bed, and as soon as my hubby got home from work (it's a late night for him) I headed off to walmart. I didn't have a big list this week (I know... amazing!), but I did need to stock up on food for Josh. I was elated to find the Gerber 2nd foods was on sale and bought more than I intended. Not that he won't use it all, but I usually just buy a week at a time. So anyway, I was in a pretty excited mood after finding I could save .45 per package. I finish all my shopping with a spring in my step. (OK not really, but you get the idea)

I get up to the check-out line and load all my stuff onto the conveyer belt. When the nice cashier gets to the Baby Food... she says something like this... "Oh, Let me guess, your baby is about 7-8 months old." I pause for a second wondering if I really want to explain why my 21 month old is still eating Gerber 2nd foods. I decided against saying anything and didn't comment. I know she probably thought I was rude and I hate her thinking that, because I actually am a nice person and don't mind talking to the cashiers. I just have had this happen so often lately... some sort of comment while I am buying Baby Food, either asking how old my 'baby' is, or they try to guess. Today it was one of those days where you just kinda snap. I don't want to defend Josh to anyone, let alone someone who knows nothing about him. The few times I have just said something like 'oh, my baby is 21 months', I usually get a 'what's wrong with him? or Why is he eating baby food?". I just feel like there are times I want people to just ignore me and not ask questions. How many of you have that same thing? Just doing very random, routine things you feel like you have to defend your child or their disability? It was just one of those days for me. I just wish there were places to go where you don't have to be on gaurd every moment. How many of you feel the same way? And what do you do? What have you done to get past it?

Wednesday, March 4, 2009

Issues With Older Brother

My poor ten year old broke down today at dinner and just cried and cried. He was sobbing so hard. I held his hands and told him it's Ok to cry. I told Marshall to give him a hug. Marshall grabbed Nate by the shirt and pulled him up so he could hug him.

Nathan was 3 when I decided to divorce his Dad. He still remembers a few things but not everything. Nate was being abused (not terribly bad but it was getting worse) and his Dad was sleeping around. The decision to divorce him was made after a lot of prayer and fasting. I know it was the right thing to do.

Nate has ADHD and severe anxiety. He takes Concerta and Zoloft but he is just not handling things lately. He's upset by everything Marshall does or says. I don't know what to do for him. I have to call the doctor tomorrow. He had a bad day at school and was tired. He comes home feeling very upset most days. Some kids are so mean!!! Nate is a sweet boy and such a good friend to everyone but some people are not nice. He needs to be in a place where people who love him can show it. Unfortunately, when I'm babysitting, I don't pay much attention to him because I've suddenly got 5 kids instead of two.

He was too upset to eat, which will get me in trouble with the doctor because he's supposed to be gaining weight. I feel like the mom in this song--

Which Part Is Mine?
words and music by Michael Mclean

She was only a dairy man's daughter,
she was only a child of thirteen;
but the stars on the radio brightened her nights with a dream.
So she called up her best girlfriend Jenny
'cause she thought they would make quite a pair,
She said, "Let's you and me, try to sing harmony
at the amateur night at the fair."

But she only had the range of an alto,
so the part she knew best went to her friend.
And when Jenny's soprano drowned out the piano
they'd have to start over again.
And the dairyman's daughter would then say,

"Which part is mine?
and Jen, which part is yours?
Could you tell me one more time;
I'm never quite sure.

And I won't cross the line
like I have before.
So please help me learn which part is mine,
and which part is yours."

She grew up and got married to Bobby
kept him working on his MBA
they had two little redheaded children,
and one on the way.

Everybody said she could work wonders,
and she wondered what everyone meant.
She played so many roles, it was taking its toll
and she feared that her time was misspent.

So she opened her heart to her husband.
They discussed everything on her list.
from the kids, to the job,
to her feelings for her Bob.
But what it really boiled down to was this: She said:

"Which part is mine?
and Bob, which part is yours?
Let's review it one more time;
I guess I"m not sure.

And I won't cross the line
like I have before
if we just define which part is mine,
and which part is yours."

Every sleepless night knows many mothers
who are wond'ring if they've done alright.
And the dairyman's daughter knew
more than a few of those nights.

Had she given her son too much freedom?
Had she smothered her two teenage girls?
Did she spoil them too much or not trust them enough
to prepare them for life in this world?

So she opened her heart to the heavens
and she spoke of her children by name.
And the prayer that she prayed
that her kids would be saved had a very familiar refrain.

Which part is mine?
And God, which part is yours?
Could you tell me one more time,
I'm never quite sure.

And I won't cross the line
like I have before.
But it gets so confusing some times.
Should I do more, or trust the divine?
Please, just help me define which part's mine,
and which part is yours.

Did you hear me?
I can feel you near me.
It is the answer
that I've been longing for;

just to know you hear me,
and to feel you near me.
It's all the answer
that I've been longing for.

Did you hear me?
I can feel you near me.
It is the answer
that I've been longing for;

just to know you hear me,
after I've done my best,
and to feel you near me.
I know you'll do the rest.
It is the answer that I've been longing for!

Tuesday, March 3, 2009


I have received this beautiful descriptive many times, yet receiving it again today, it always seems to move me. I have no idea where it originated or who wrote the words of wisdom.........but somehow, maybe it will be a new encouragement to some of and hugs, Annette

Recently I overheard a mother & daughter in their last moments together at the airport. They had announced the departure. Standing near the security gate, they hugged & the mother said, 'I love you, & I wish you enough.' The daughter replied, 'Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom.'
They kissed & the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted & needed to cry. I tried not to intrude on her privacy, but she welcomed me in by asking, 'Did you ever say good-bye to some one knowing it would be forever?' 'Yes, I have,' I replied. 'Forgive me for asking, but why is this a forever good-bye?'.. 'I am old, & she lives so far away. I have challenges ahead & the reality is - the next trip back will be for my funeral,' she said. 'When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?'She began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone.' She paused a moment and looked up as if trying to remember it in detail, & she smiled even more. 'When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them.' Then turning toward me, she shared the following as if she were reciting it from memory. I wish you enough sun to keep your attitude bright no matter how gray the day may appear.I wish you enough rain to appreciate the sun even more. I wish you enough happiness to keep your spirit alive & everlasting. I wish you enough pain so that even the smallest of joys in life may appear bigger.. I wish you enough gain to satisfy your wanting. I wish you enough loss to appreciate all that you possess. I wish you enough hellos to get you through the final good-bye. She then began to cry & walked away. They say it takes a minute to find a special person, an hour to appreciate them, a day to love them; but then an entire life to forget them.

Adding A Stimulant

I talked to the nurse at my doctor's office (who then talked to the doctor). He recommended we either increase Clonidine (that's his sleep medication), increase the Risperdal, or add a stimulant. Ugh. Sometimes I hate being a parent. I hate making this hard decision. I love that my doctor takes into consideration our opinion but sometimes I just don't know. After talking to my husband, we decided to add a stimulant to ATTEMPT to calm this kid down a bit. We've tried it before but not on the increased dose of Risperdal. I hate medicating him but it is so neccessary. Before we had him on Risperdal, he was so angry and out of control. It was awful!! Risperdal helps but it's just not enough.

(BIG SIGH) I'm hoping and praying we can figure out how to handle each day. We just keep going every day. We make each other laugh, read our scriptures, and listen to beautiful, calming music. That helps.

Monday, March 2, 2009

I Must Be Crazy- What's Going On With Us

This is what is going on here. It's not the best post but I'm really tired and want to get to bed but need to post this.

We are planning a vacation at the end of April to go to Naperville, Illinois, where I grew up. I'm really nervous about how Marshall will handle it. He has been more intense these last few weeks. Yes, it does cycle, but this is out of control. He doesn't sleep well, tries to eat but tells me he has to throw up. He is hitting a lot more and now started licking people and things again. Gross!!! He likes to lay on my arm or just lay on me while I'm sitting up. He touched our feeding therapist in the crotch 2 weeks ago and has tried touching me on the chest a few times too. The hyperactivity is going strong still too. Oh, and he's been a LOT more angry and threatening over the last few weeks. He doesn't seem happy. Who could? I want to take a picure of him so you can see his eyes. They have dark circles under them. I brushed him and did his "tens" (joint compressions), and with Clonidine and Melatonin in him, he went to sleep. I love that time of day. In the mornings, he's a bit snuggly but easily upset. All he wants to do is to play Disney's Toontown Online . He cries a lot, screams a lot, talks a lot (AND LOUDLY!!!!!!), jumps like crazy all over the place, and is more defiant. We are all tired. Really tired. I have more that I need to blog about but I haven't had time to do it yet.


Moms & Dads........this especially speaks to our families, I feel, in an even greater magnitude...May God help us, as we try so diligently, to find OURS wings.............