Thursday, June 26, 2008

Tuesday, June 24, 2008

update on Noah not having surgery.....


We get to the hospital.....Noah is registered....placed into a room and being prepared for surgery. I had asked all along that he be re-evaluated by his doctor/surgeon to make sure he needed the surgery because I still felt he did not but the doctor/surgeon was not to re-evaluate him till the morning of surgery!

I have always felt since Noah WAS BORN with descended testicles that he did not have the diagnosis of undescended testicles but instead "retractile" testicles which is defined here:

Retractile (hypermobile) testes are descended testes that easily move back and forth between the scrotum and the abdomen. Retractile testes do not lead to cancer or other complications. The testes usually stop retracting by puberty and do not require surgery or other treatment.

Anyway....last year when Noah saw this surgeon he performed a test on Noah and at that time Noah's testicles remained UP more than down...though they did make an appearance from time to time. BUT because they did not stay down during that test....the doctor diagnosed him with undescended testicles. I remember pleading with him on this and asking how could he be born WITH descended testicles only at 5 years of age or so for them to have rolled back up inside? I asked him if we could wait until PUBERTY because maybe since Noah was slow to develop in some other areas involving muscle tone he was just SLOW to develop there and would catch up? This doctor/surgeon really felt it necessary to perform a bilateral orchiopexy and drop those testicles down into place and seal off the inside so they could not roll back up inside anymore. If there were hernias inside (which I also felt Noah did NOT have) he would also repair those at the same time.

Noah was originally scheduled for surgery last November. I canceled it because he had just started school and was doing so well that I hated to yank him for that and have him miss.....etc. I rescheduled the surgery for yesterday, June 23, 6 months later.

DURING that 6 months Noah and I prayed about this. I really felt that he would CATCH UP and his testicles WOULD drop down into place and be down more often than not. During the month of May Noah's testicles WERE DOWN the entire month.....and he, for the first time, was AWARE of them on the outside of his body.....and would make comments if anything banged into them.

However at the end of the month and a few times of being banged around......they seemed to disappear back up inside him and remained up more than down again. BUT I noticed Noah also had the ability to make them go up or down using his own muscles...something he could not do before and I guess something most men cannot do on their own according to the surgeon yesterday. I suggested to Noah that he practice that movement as often as he could to strengthen his muscles there and we continued to pray for God to allow Noah's body to be the way it was meant to be and everything to be okay so he could avoid surgery.

We got to the room yesterday and Noah was admitted for surgery. We were there about 3 hours before the surgeon finally came in to examine him before surgery. It was during that exam he determined that Noah's testicles were indeed DOWN and stayed down during his exam....so he did NOT have to have surgery after all as he had "retractile" testicles. He stroked the inside of Noah's thigh and said "see" and his testicles rolled up inside him and then came back down. I said well Noah can do that on his own without anyone's help or stimulation and the surgeon said "oh no he can't" and I said "yes he can!" and he argued with me a minute and I finally told Noah to show the doctor and to suck those testicles back up inside him and then drop them back down.....and just that fast Noah lying there spread eagled for the doctor rolled his little testicles back up inside his body and then let them back down when I told him to! haha..The surgeon was stunned and could not believe Noah could do that especially on his own!

BUT to make my very long story short Noah will NOT require surgery on his testicles.....so that is great news and a happy ending!

They DID hear a heart murmur on his exam which a long time ago they had heard.....so he will need to see another cardiologist again for some tests and a check up. The last time he had the murmur the cardiologist in Colorado after testing said he did not hear it and he was fine...etc. Two doctors yesterday heard it so we will go for an evaluation.

Otherwise ...Noah is home and happy he is home and not had surgery.

We appreciate all your thoughts and prayers!

We will not be charged for anything according to the hospital yesterday when I called.

Monday, June 23, 2008

Dear Noah.....you DID NOT have to have surgery!!!!!

More on this in a bit! BUT Noah did NOT have to have surgery because as I have been trying to tell the doc all along...he has RETRACTILE testes instead of undescended.....so the surgery was canceled today after the surgeon examined him!

YEAH!!!!!!!!

I will post more later.....just did not want anyone to worry or keep wondering!

We thank the Lord..literally!

Saturday, June 21, 2008

Dear Noah.......surgery day is coming up fast!

you are a little anxious and scared you said about your surgery on Monday. That is totally understandable!

You have been super sweet lately....and yesterday when I went in to finally try to take a short nap because I had been up all night the night before working.....when I asked you what you wanted you said "just to tell you I love you."

THAT was incredibly touching......and maybe because of lack of sleep.....not sure....I could have bawled my eyes out. BUT instead I grabbed you and asked you if you wanted to snuggle up in bed with me which you did.....for about 3 minutes......but you snuggled up tight!

You have been requesting to do all these things for the LAST time you say...then quickly add "before your surgery." I have to say you saying it the way you do freaks me out.

SO....Noah and I welcome all prayers for his surgery on Monday. I pray all goes well too and he will do well and be even better and stronger afterwards very quickly.....because I cannot imagine life without him in it!

I LOVE YOU NOAH WESLEY!

Mommy
XOXOXOX

Thursday, June 19, 2008

Dear Noah.....you completed the surgery tour.....



We finally DID successfully make it to the hospital last night for your pre-surgery tour. There was a nice-sized group.....and you did very well. At the end you all got certificates of completion and a mask and hat to take home.

Once back outside in the parking garage you let loose....and started making all your loud sounds.

We stopped by Grandma L's house because she had a special surprise for you. Since you were little you have always LOVED to push things.....like mini shopping carts.....strollers.....mowers....anything. You especially like strollers but now your toy one is just too short to do it comfortably. I understand that PUSHING is one of your sensory needs and it soothes you. Grandma L. decided to buy you a BIG umbrella stroller to push around....so we stopped by to pick that up on the way home.

Here you are with your new wheels:



AND today was another gorgeous day. I have been out of work more than with work....so I decided to take a break and mow..then weed and trim and water the flowers and feed the birds and wash the car and take out the trash and get the mail and show you what one of those Maple tree seeds look like once they take root...I also showed you our pumpkins coming up out back where we sat those 2 pumpkins from the year prior....

THEN you wanted to go to the park and FLUSH TOILETS....PLAY in the bathroom. I cannot say too many kids want to do that! SO I took you today. You flushed all 3 of the men's toilets and urinals over and over again while I sat outside waiting for you. ONLY of course after making sure the bathroom was empty. There is a vent on the outside I can yell through to tell you when enough is enough...and you stop when I tell you to. So while the other kids were playing at the play area....you were happily flushing away inside the restroom.

You saw a jogger at the park. A man. He had no shirt on. You have remarked on this before...telling me how you just thought it was GROSS and WRONG for a man to be IN PUBLIC without a shirt on. Today you asked me "men who run with no shirts on are drunk right?" I almost busted out. I asked you "what?" and you asked me again. I told you "no....most men who run without shirts are probably just hot and definitely not drunk as they are trying to take care of their bodies by running and staying healthy." You said "well maybe only ELDERLY gentlemen are not drunk" (because this one was an elderly man). You also told me you think sometimes they just don't wear shirts to show off and you think that is wrong in public.

On the way home..you told me you wished you were already 31 years old. When I asked you why you told me "because I would already be alone and I could stay at the park in the bathroom for as long as I wanted flushing the toilets."

I said "oh you wish you were older and living on your own so you could do whatever you wanted when you wanted for as long as you wanted." You said "yes."

I quickly reminded you that even then.....there would be times the flushing would have to stop ....you might need to go somewhere else ...you might need to go to work.....and if others saw you at the park...as an ADULT man flushing toilets over and over......since most adult men do NOT do that....they might wonder why..and find that strange.

I don't think you really cared. Your toilet obsession is at an all-time high.

You have made a couple of other cute comments lately....but for the life of me......I seem to have misplaced those thoughts. So I will get back to you on that!

I love you Noah. Your surgery is scheduled for Monday at 11:30 a.m. tentatively.....we must be there by 9:30 a.m.

Mommy
XOXOXOX

Wednesday, June 18, 2008

Dear Noah......emotional days for you lately......

I am not sure what is going on inside your body and mind.....all I know is you have been pretty emotional lately. I won't rehash everything over the past couple of weeks here again..suffice to say you cry at the drop of a hat....have a semi-fit....sort of get over it...and within a short time it can happen all over again. VERY similar to how you used to be when you were very young....been awhile since I have seen with such regularity.

BUT we are now hopefully reaching a steady calm in the stormy seas.....as we cut back a bit on some of the activities outside the home and do a few more just you and me within the home and out in our environment. I have realized I cannot take you to the pool and then somewhere else in the same day...it is just too much.

We did go to the pool the other day. One of your classmates from school was there and he was so excited to see you. The two of you had such a good time. All in all the day was a great one...with great weather and good times in the pool.

However later when we headed to the hospital for your presurgical tour....we never made it because of a closed highway and wrecks and construction and well...crap.

This upset me and you.....so we headed to your aunt Angela's house earlier than planned ..or event #3. You cried almost the entire time there about something. Needless to say we all learned a valuable lesson. You can only do so much in one day before it is oversimulation to the max........I need to keep my cool as I am setting an example for you on how to HANDLE stress in a positive way.....and keeping things simpler works better for us all.

Here are some pics of you and your bud Cameron at the pool!




Saturday, June 14, 2008

Dear Noah.......you wanted me to make a recipe from your Rachel Ray cookbook....

you picked a meatless recipe with lots of veggies and brown rice which I love.....so....here is the result. Of course I condensed the version down for just ONE serving...instead of 4....and made a few modifications.....but it was YUMMY or YUM-O as Rachel Ray would say!

You could basically probably use any rice stuffed pepper recipe...but then pour taco sauce over it before baking.....for a simpler faster version...

Southwestern Style Stuffed Peppers

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Friday, June 13, 2008

Dear Noah.......you and cooking.......

You seem to be feeling a little better.....your eyes look better. However yesterday you also made a lot of noises and laughed a lot watching videos which made you have coughing fits...and because you were so LOUD you ended up where your throat was sore again last night and you had a difficult time swallowing.

I did hear you play some pretty songs on your piano....one sounded very Oriental...Chinese......and I tried to get my camera in there to record it before you stopped.....I only caught part of it but it is below.....and then I realized I was holding my camera SIDEWAYS when recording.....so the entire film is sideways.......

oh well.

You brought out your Rachel Ray cookbook last night....wanting me to skim it to find something NEW for me to cook for.......me.

You found a recipe for me to try today and left your cookbook on the kitchen counter turned to that page.

I love you......you are very sweet.

Mommy
XOXOX

I will post that clip in a second......having problems with Blogger's video uploader.....as is typical

Thursday, June 12, 2008

Dear Noah......well..you are improving a bit......I think...

You are still coughing....a lot....your pinkeye is a bit better but also spreading to the left eye...but they both do not look too awfully bad.

You do seem to sleep better I think at night....the Zyrtec does absolutely NOTHING for your symptoms. Good ole' Claritin still works better.

You have been grumpy....I know because you don't feel all that well. You are also concerned about not being able to go swimming for awhile.....because of being sick....pinkeye....

anyway....you will get better.....sooner than you think! I pray for you every night and day.

I love you Noah...even though you were quite sassy and mouthy with me today!

Mommy
XOXOX

Tuesday, June 10, 2008

Dear Noah......you are sick.....

I had to take you to the doctor's yesterday and to the ER this morning because while the doctor yesterday thought you just had allergies or hay fever symptoms....you seemed to get so much worse overnight. You have had symptoms now since last Thursday....I think it is much more than allergies or hay fever. You now also have pinkeye.

So.....it has been something...but you now have antibiotics. I am tired because you have not been sleeping at night well at all...which means you come to me.....and then neither one of us gets any sleep.

Today I am also trying to work now while you play on your computer or rest.....but I am not doing very well. I just really need to take a nap but that is just not possible right now.

Your surgery is scheduled for June 23. Providing you are well enough.

I love you....I pray you start feeling better really soon.

OH......you do look cute with your hair cut short again!

Mommy
XOXOXOX

Monday, June 09, 2008

Autism Awareness....

HELP MAKE A DIFFERENCE.....


I found a fabulous autism site the other day where you can purchase products for autism awareness. MOST of the products are made by people on the spectrum and ALL the orders are filled by people on the autism spectrum. They have lots of valuable information as well.....

I am not one to wear jewelry but you can also purchase keychains or hang these things from your purse or car rear view mirror.....etc.

I found this site the other day when I was doing some autism awareness research and they are one of the first autism awareness beaded items I have seen that actually had an excellent way to show awareness......I don't know...I just liked them a lot and found their site and items for sale very very nice and helpful.

If you are interested go check them out here:

LUCAS WORKS

LucasWorks was started by Lauren Padgett, mother of two terrific children, one of whom (Lucas) is autistic and mentally retarded. Lauren and her husband, Alan, saw the need for both autism awareness and daily living products to help Lucas, and the eventual need for Lucas to have employment. They decided to put these ideas together, and LucasWorks was born under the philosophy, "It works for Lucas and it gives Lucas work!"

As parents of a child with autism, Lauren and Alan were dismayed to discover that many of the products that are supposed to help autistic people are mainly focused on either medical or educational settings. Like many other parents, it was on the home front that they were seeking help.

So they began to devising their own items to help Lucas if they couldn't find anything on the market. The LucasWorks "Apparel Indicating Weather Thermometer" was born this way, and it is indeed the first product of its kind, hence the patent. The "Child's Placemat", that shows children how to set a table correctly, came along the same way, and we're working on some other things that we hope you'll like, too.

Lauren has years of experience working on behalf of children, especially those with disabilities. Among other advocacy efforts, she has Co-Chaired the State of Delaware's "Partners' Council for Children with Disabilities" (PCCD), and served on the PCCD's Professional Development, Family Involvement and Inclusion sub-committees.

Lauren has also devoted time to serving on the Delaware Autism Program's (DAP) Strategic Planning committee, the Kent County DAP site School Improvement Planning committee, founded the Staff and Parent Autism Resource Center at Lucas' school, and is serving her 4th year as Chair of the Kent County, DE Autism Program's Parent Advisory Committee. She is a member of the Autism Society of Delaware and the Autism Society of America. Of course, that's all worked in around the needs and schedules of Lucas and his brother, Robert!

All of LucasWorks' products either promote autism awareness or help those with autism. By focusing on these lines, we are able to spread the word about autism while offering items to help those dealing with this disability.



This is Lucas, the inspiration behind LucasWorks. Lucas thinks Deep Thoughts and works hard to understand life. He has a great sense of humor, and loves to hang out with his big brother.

Dear Noah.....you still don't feel all that well....

You have been fighting off some sort of sore throat....where you act like it really hurts to swallow......and you cough off and on. No fever really....though the first day you did have one when you first woke up....none since though.

This is similar to when you had pneumonia.....but you thankfully do not appear that bad...but with possible surgery coming up I need to make sure you are healthy and stay healthy. I cannot believe the hospital has not called us yet wanting you to come in for a check up BEFORE surgery....and no one has contacted me yet to confirm an exact time.

I was hoping and praying (and still am) that your testicles would STAY DOWN like they had been for a few weeks....so you could avoid surgery. Now some days they are not always present again. SO you will need to be re-evaluated for sure.

I may call today to see if you can get in to see your family doctor for a check up and he can also examine you down there and then I can always call and make a follow-up appointment with the urologist for another check.

Meanwhile you have been tossing and turning at night.....severely.....not sleeping well.....so you naturally want to share that misery with me I guess because you have been wanting to sleep with me or have me sleep with you. Then I don't sleep well if at all....no wonder all I did yesterday was sleep off and on pretty much all day......

Today I am fighting off a migraine and whether you are totally up to it or not we HAVE to go to the store today. We cannot put it off any longer.

It has been super hot here....something in the air I think may have set your allergies/sinus symptoms off.

I love you Noah.....we are going to plan some field trips for this summer too!

Today I will probably cut your hair....and you really need a bath!

Mommy
XOXOXOX

Friday, June 06, 2008

Dear Noah.....your last day of school....


was good.....but as the day progressed and you realized what was really happening.....you did become sad and when you walked out at the end of the day you were really crying hard.

I sort of knew this would be the outcome...but you snapped back pretty quickly realizing that while you would miss everyone a lot....you would get to see most everyone again in August.....and that we could enjoy the summer together.

I felt really bad for you though.

Once we got home I started sifting through the entire STACK and piles of school stuff you had brought home. I was so impressed. I had NO idea they taught you so much in school this year because all I saw throughout the year were tiny bits and pieces in your homework. FINALLY all the larger missing pieces were there and it all made sense.

I got to see so much of your work..things YOU ALONE worked on .....and ways you EXPRESSED yourself. I had often wondered when you were younger if one day I would ever get to see or hear you express yourself. IN ANY fashion.

WOW was I stunned. I sat there crying as we went through your stuff. I found a POETRY BOOK....a book filled with things you drew and cut out or wrote yourself. I had no idea you could or were doing such things until I saw that.

I read some short stories you had written and TYPED. Discovering how you THOUGHT and how you PERCEIVED and your mind worked just amazed me. I was speechless.

I immediately wrote a huge thank you e-mail to all your teachers and the principal....thanking them for not giving up on you and for teaching you so many wonderful things.

Because you have had this experience in a public school and it was successful this time round.....you have grown so much as a young boy. You have matured. You are much more self-confident and willing to try new things. You are becoming your own very distinct person....

and I love you even more.

Mommy
XOXOX

(TODAY FRIDAY (seemed like Sat!) you are not feeling all that well. On the way home from Grandma C's house last night you had a really bad headache...and I had to pull over so you could vomit. ...today you are taking it super easy...and only eating Popsicles though you say you feel okay...just not yourself. I think you miss school and have told you I am redoing my schedule yet again so I can spend more time with you during the day to work on school projects here at home again and to do MANY field trips.....)

Wednesday, June 04, 2008

Dear Noah......the swing not in the proper position at the park Sunday really upset you.....

I do not always see things bothering you like they used to ......where you would obsess and cry and have almost a meltdown over something being out of place....or not quite right.......apart from the "norm" in your immediate environment.

Sunday at the park at the Reunion this happened and I was quickly reminded of how you used to be all the time....what used to be commonplace......a daily occurrence many times over.

You went to swing on the swings at the playground and there was one swing that a group of teenagers had tossed up and over the top bar so it was all messed up and not hanging correctly. This TOTALLY upset you.....and you were having a fit.......and no matter what I said to you to tell you this was OKAY and you had at least 6 other swing choices to choose from.....you were still upset. AND I MEAN getting very very upset.

Well auntie Margaret came along and with her one crutch she is still on from her broken foot she was able to lift the swing up and push it up and over the top bar twice to get it into the proper position for you to swing on. Needless to say you were ecstatic this happened......BIG THANK YOU to MARGARET on this one!






And all was right in your world again...and as fast as the "moment" happened.....it was all over and you were back to yourself again....calm, cool and swinging!

Mommy
XOXOX

Tuesday, June 03, 2008

Dear Noah.......we made bookmarks for you to take to school tomorrow to give to your teachers....

yep..tomorrow is your last day of school! You will have successfully completed a full year in GRADE school in a public school.....this is HUGE for you!

It sounds like one big party tomorrow and we could not think of what to have you make to give to your teachers.....so we decided on bookmarks. PERSONALIZED ones with YOUR photo on them and we laminated them too!

I think they turned out pretty well..

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I love you Noah Wesley and I am so very proud of you and happy for you too. I hope tomorrow won't be too emotional for you!

Mommy
XOXOXO

Dear Noah....today you have an administrative absence from school...


MR. FLEXIBLE HIMSELF.....


They are doing this incredibly long field day combined with walking field trip and putt putt golf.....so you were excused from school today. They know there is no way you could handle the heat, the walk and then the competition very well so they felt it best (and we agreed) to let you stay home today. Tomorrow will be your last day at school and you are all to take in a special treat to share with everyone else as basically it sounds like a big party day. You want to take fruit roll ups.

We took Tom to the vet yesterday (the stray cat from grandma C's house and he is healthy after all so today he will get neutered and his shots. We will pick him up tomorrow late afternoon early evening then to take back to grandma C's house. After that we stopped at the park in grandma and grandpa L's town and you played for awhile....then we stopped at a local car show and checked out some hot rods......and then we went to visit grandma and grandpa L. Finally back home it was about 8:30 already where you spent time on my PC enjoying photos and videos. Next up bedtime around 10:30...and you slept well last night being tired from SUCCESSFULLY doing a walking field trip at school to the local DQ and then all that activity with me after school.

CLICK TO ENLARGE THESE IF YOU WANT!!!





We also saw a gorgeous sunset we took many photos of......

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Today you are enjoying time on your computer designing houses.....and watching train videos. IF we have time and the weather holds out (we are to get severe weather later).....we might try to go in search of some trains for you to videotape.

With me working and not finishing till afternoon sometime...there is not much else we can do probably today.

I DID make it up town yesterday in time to RECORD the emergency siren going off. It lasted an entire 3 minutes and 30 seconds with 12 seconds wind down time. WOW was it loud up close and personal.

Anyway.....I love you......and we will have to celebrate your completing a FULL YEAR in GRADE SCHOOL once the year is out. AND today is the day you MUST MAKE presents for your teachers if you are going to.

Mommy
XOXOXOX

video

Monday, June 02, 2008

Dear Noah.....yesterday was our family reunion....


You and Audrey always have fun together...




The last time we went to the Family Reunion was when I believe you were around 2 years old. We had come back for a visit from Colorado and you had actually accidentally fallen on my parent's front window and busted open your inside lower lip clear through to the outside with one of your teeth so we had to take you to Children's Medical Center before going to the reunion. Now you are 9-1/2 years old already....and you did very well though you got bored a few times because you basically just wanted to stay either playing at the playgrounds or playing in the men's bathroom the entire time.

Yes.....your obsession with bathrooms ....mainly toilets and urinals.....continues. I do always try to satisfy those obsessions so I made time to allow you to play in the bathroom....even recording you flushing the urinal. This after everyone in the park had pretty much gone home and it was empty.

This morning I took you to the park before school and before the park got busy so you could go into the men's restroom there and flush the toilets a few times. You had to also take a peek at the women's stalls.

I stood outside the men's bathroom (AFTER we made sure it was empty) and listened to toilet after toilet flushing.....finally yelling in to you with a STOP TIME because I had to take you to school soon.

You had a fitful night's sleep last night....and came into my room at 2:00 a.m. saying you could not sleep. So instead of just YOU tossing and turning I TOO then could not sleep so we basically were both not sleeping....and next thing I know it was 4:00 a.m.! You finally fell asleep and so did I but today I am fighting off a migraine .....and nasal stuffy crap from being outside all day yesterday probably. Allergy stuff...something. Your nose and right ear has been bothering you.

Today you have another walking field trip if you can handle it. I have given permission for you to go. You are wanting to do more and more and I really want to allow you to try as much as you can do. You are being walked to the Dairy Queen for treats. I know you don't eat anything from Dairy Queen but you were happy to know they do serve SPRITE....so you will get something to drink.

Tonight you may skip group because we are going to try to catch the stray cat at Grandma C's house to take to the vet.

I love you Noah.....I hope you have another great day today......only 2 more days of school left!

Mommy
XOXOXOX

video

I think I turned the camera sideways to get the entire urinal in......sorry about it being on the side.....

OH....today is the monthly testing of the emergency sirens in town....so I promised you I would head over to the newest one by the post office in time to hopefully record it UP CLOSE. I better get that shower now.....noon will be here before you know it!