Happy 6th Birthday Emily!!!

                HAPPY  6th  BIRTHDAY!!!

Sunday - School Podcast - (Emily)

This weeks Podcast is (Penguin Polito).

Sunday - School Podcast - (Emily)

This is the 2nd week of Emily's class podcasts. This weeks podcast is titled "Best Part Of Me."

Enjoy....!

Sunday - School Podcast - (Emily)

Last week while downloading Timmy's final podcast of the year, I realized that Emily's teacher had posted 4 short podcasts of her class. So for the next 4 weeks, I will be adding the podcasts from Emily's class.

This weeks podcast is "Snowkids On The Farm" (Hence Mrs. Snow was Emily's teacher's name.)

Enjoy...!

Princess And Pirate Day At School

                              Princess or Pirate Dress-Up Day at school....

Doesn't she make a Beautiful Princess?!

Hi-Ho, Hi-Ho Off To Grandma's They Go

 

The kids are suppose to start their Spring Break on Friday, April 1st. We decided to keep them out of school for 2 days, so that they could go to IL with Floyd to visit Grandma. Timmy hasn't been to visit Grandma, since January 2008.  He is so excited. And is looking forward to being able to visit with his cousins once again.

Being that Timmy is a special needs child and requires a great deal of extra items when travelling, food, diapers, diabetic supplies, medications. I always feel as though I'm forgetting to pack something. It isn't until he has been gone from home a few days before this feeling go away.

In the past when we have travelled with Timmy we packed all of the food that he would need for our entire trip. When Floyd took Nate to visit Grandma last month, it was brought to his attention by an Amtrek employee that the chef who prepares the on board meals could prepare all of Timmy's meals. A few days ago, Floyd had a long phone conversation with the Chef . The Chef felt very positive that he would be able to prepare Timmy's meals as he needs them. So Floyd agreed to let him try. Even though this service was put into place, being the well prepared mommy that I am, I went ahead and packed Timmy some food for his trip, just in case. If the Chef does get the consistancy of Timmy's meals correct, travelling with Timmy will be a breeze in the future. Our bags will be a lot lighter.

We travel by Amtrek ALOT. When travelling with Timmy on the airlines, the airport employees haven't been very acommidating or helpful. And getting Timmy through security with all of his necessary medications and supplies has been a NIGHTMARE!

Here are a couple of pictures of Timmy and Nate together today before they left for the train station. Nate LOVES his brother. Well, Timmy LOVES his little brother, especially when he is crying. Timmy thinks that Nate crying is hysterically funny. Maybe he knows that most of the time Nate's tears are crocodile tears. I swear sometimes it seems that these two have their own form of communication. Who knows. And they sure won't tell their secret.

Pictures From The Past

One of Emily's classmates (Ashlyn) mom created a photo album on http://www.winkflash.com/ for parents to upload class pictures. This photo album is a great way for those parents who are unable to attend class events to see just how much fun the kids had. Thanks Melissa!

I'll admit I had forgotten about the album, until I was going through some ond e-mails and came across the link.

Here are a few (not all) Holiday and Farm Inquiry pictures of Emily and her friends.

100th Day

Today is Emily and Timmy's 100th day of school. They each had to do a project that included 100 objects to represent the 100th day of school.  I have to admit this my favorite project of the school year. I get to use my creativity to guide Emily and Timmy in learning.

This year was Timmy's 2nd year doing this project. This year the project was lead by the UNCW student teacher in Timmy's class. Brandi made up bags which contained a paper hat and a few object to help get parents and the child started with making the 100th day hat.

Where's Timmy?

We used a blue Bingo Dobber, sticky back ABC's, the numbers 0-9, and a few other miscellanous "shaped" objects that had to be glued to complete the hat. Doesn't he look so cute?

100 multi colored pom-poms glued to a paper plate make up Emily's hat. She had LOTS of fun helping to make her hat. She  was so proud of her creation she wanted to wear the hat to bed last night and to the bus stop this morning. We came to a compromise, she was allowed to wear the hat for a few minutes this morning before we left out to go to school.

How adorable is she?

I looking forward to next year!

Round Three With A Twist

Winter is my least favorite season. I hate having to bundle up in layer upon layer of clothing. I hate being cold. I hate when my babies get sick and have to suffer through the aches, pains, fevers, spitting up, loss of appetite etc. that goes along with the flu or a cold. It breaks my heart that during these illnesses that I can't just take away all of their blah and leave them happy, smiley and care free once again.

During the winter it seems that no matter how careful we are by frequently washing hands and by sanitizing items and surfaces once a person has finished using it, the inevable happens, someone gets sick.

Timmy was the lucky or should I say the unlucky one. He was the first in the family to be diagnosed with the flu. For a child with a compromised immune system, he ended up having the mildest case of the flu that I have ever seen, thank goodness. Like most kiddos who have compromised respiratory systems, when Timmy gets sick his condition can go downhill very rapidly. Forty-eight hours with a temperature, 2 days of missing school, and a productive cough, this was the extent of Timmy's flu symptoms and its full course.

Now Emily and Nate both have been diagnosed with the flu. Emily's symptoms seem to be similar to those Timmy has. Poor Nate has not only these symptoms, but the achiness, runny nose, spitting up, and a cronic ear infection. It has been 4 days since he has shown symptoms of the flu and he just is starting to turn the corner for the better. It breaks my heart to look into his puppy dog eyes, which seem to be pleading with me to take away the aches and yuckiness of his illness and all I can do is cuddle with him and try to will the medication to work faster and will his body to get well soon.

I'm counting down the days until the first of April. At which time here the weather should be much warmer. My favorite season of the year. Only 61 days to go!

The Good, The Bad

When in life you are given lemons, make lemonaid. When I first read this quote 6 years ago, I knew I had to find something positive to focus on when given bad news or faced with a difficult situation, just to be able to keep my sanity. Today was no exception......

Today Emily, Nathaniel and myself all had appointments at Duke Eye Center. My visit was with Dr. Afshari, my corneal specialist. This was my 3 week post-surgery visit. Everything looks great! I can't put into words just how happy I am to be able to see once again. To be able to help take care of Timmy's medical needs. To be able to take care of my own personal needs. To be able to read with Emily and play computer games with Zach. To be able to continue with this blog. And the most important thing in my life, is once again the ability to be able to read. Reading is my life. Without the ability to read I felt lost and thirsted for information, knowledge and the satisfaction that comes with having read a good book.  I so missed doing all of these thing for 6 looong months.

Emily and Nathaniel both had visits with a Pediatric Genetics Opthalmologist. Floyd took the kids over for their scheduled appointment, while I waited to be seen for my appointment.

Emily's eyes were checked first. Her vision is perfect. We didn't need an opthalmologist to tell us this. Emily misses nothing! In the mornings before we leave the house to go wait for the school bus (her bus stop is directly across the street from the house), Emily will open the window shade so that she is able to see through the window what she is missing in the house. Timmy's nurse's will hear about whatever she may have missed if she feels that it was important enough that she have been involved.

I walked in just as Dr. Young had finished examining Nate. I immediately knew something was wrong, aside from the fact that Muffin missed his Mommy and needed to cuddle, when Floyd suggested that I take Nate, sit and cuddle with him, that he needed his Mommy after what Dr. Young just discovered. My heart dropped to my stomach. It took every ounce of my being for me not to cry. Voices in my head kept saying NO THIS CAN'T BE TRUE!.... SEEK A SECOND AND IF NEEDED A THIRD OPINION! My heart knew the real truth, even though my head is still in denial. Before I got pregnant I knew the odds were stacked against me. I was willing to take that gamble. With Nate now having the diagnosis of aniridia and possibly glaucoma, I feel I still won the genetics gamble. Nate is such a good natured baby. Crying only when he is wet or hungry. In such a short time he has brought so much joy to our lives. And he makes me feel that our family is complete.

Now is where I start to make my lemonaid.....

Who better to care for and raise a baby with a visual impairment, but 2 parents who are visually impaired. We have the knowledge, skill and have mastered the tricks necessary for survival as a visually impaired child/adult in what is sometimes a not so friendly world.

We received Nate's diagnosis early. Now we are able to start the process of getting him vision therapy, which will aid Nate in learning to use any useful vision that he may have. If we had found out months or even years down the road, we would have lost a lot of ground in getting Nate the assistance he needs. If he should have glaucoma, by not knowing the diagnosis early any useful vision could be lost due to damage to the optic nerve from the inner occular pressure.

Learning the diagnosis now, we have the opportunity to seek getting Nate an MRI to rule out any brain malformations, which may need addressing with medical intervention or other therapies.

Being that some people with aniridia have hearing problems, we have started the necessary process of getting Nate an ABR (audiotory Brainstem Response) hearing test. Nate passed his newborn hearing screening, but the ABR is a more extensive test and will help rule out any problems, which may have been missed with the standard newborn hearing screening. Having this information early, if Nate should have a hearing problem, we will be able to get hearing therapy started and have him fitted for hearing aids or other devices if needed.

We know that Muffin can see. He startles when someone turns on or off a light in the room. He stares at his crib mobile and reaches for toys on the toybar on his bouncy seat.

He can hear, but how well? I feel that his hearing is fine. He startles to loud or unexpected noises. And he calms when crying when spoken or sung to quietly.

Starting in my 2nd trimester of pregnancy, I had an ultrasound 2 times a month. In my 3rd trimester, I had an ultrasound once a week. Even though ultrasounds are a tool and aren't 100% perfect in finding problems, I feel that with all of  the ultrasounds that I had if something serious was wrong it "should" have been seen. So far Nate has reached all of his developmental milestones, which also suggest that his brain is functioning properly.

So the plan as of now is for Nate to have a consultation with a Genetics Doctor. We have requested that Nate be seen by Dr. Muge Calikoglu at UNC. She is Timmy's Genetist and the wife to Timmy's Endocrinologist. Nate will have a blood draw to test him for a mutation of the PAX-6 gene.

Physically, I'm up for the challenge of caring for another child with a visual impairment. Mentally and Emotionally, I'm still in shock and denial. I keep asking WHY this has happened yet again to our third son? Is there anything I could have done differently before and during my pregnancy to have prevented this from happeneing once again? Why did GOD choose Nate to have this affliction? I know the answer to these questions and all of the other questions, which keep popping into my head, but the questions along with the known answers keep cluttering my brain.

You are probably asking yourself, if I knew that Nate having a visual impairment was a possibility would I be so in shock and in denial? For nine months I hoped and prayed that he would be able to see. Following Nate's birth the Pediatrician gave Nate a clean bill of health from head to toe. We even asked specifically his opinion in regards to Nate's eye sight. Nate's Pediatrician's opinion was that Nate's eyes looked perfectly healthy. I was so releived. I thought that all of my prayers had been heard and answered. Nate would be able to see to run and play with his siblings and friends. He would be able to lay on a blanket outside at night and see to wish upon a falling star. He would be able to see the wonders of a rainbow following the rain. He would be able to see the true beauty of the colors in nature. To see the clouds in the sky on a clear sunny day and form pictures from these fluffy clouds in his mind. And in later years, possibly see the face of his newborn son or daughter. Now there is uncertainty as to whether Nate will be able to do any of these things.

 In the end I know soon enough I'll come around to reality and accept the fact that Nate is visually impaired. I'll wipe away the tears. Stop blaming myself for being so selfish in wanting another baby after knowing the odds of having a baby who would have a disability. I'll go on with my life, Loving, Caring and Protecting Nate, because these things won't change with his new diagnosis.

With all of my heart and soul, Mommy Loves you Muffin!!!!

                                                

Swinging

It doesn't seem that long ago when Timmy hated to be outside if there was a breeze blowing. Now he loves to be outside and have the wind blow in his face and ruffle his hair. Just about every time now when we take him outside to swing if the wind isn't blowing Timmy will call the wind, woo-woo. If the wind should happen to blow after he has called it, Timmy will laugh hysterically and continue to call the wind once it has ceased in hopes that it will start blowing once again.

We purchased this swing almost a year ago for Timmy, so that he could enjoy some vestibular stimulation. My dad (PaPa) was able to build a swing frame this past Spring, which would support the swing. And allow the swing to be able to move like we wanted. Timmy and Emily love the combination of the spinning and swinging motion of the swing while being swung.

The swings max weight limit is 176lbs. The swing basket is large enough for Emily to lay in while swinging.

First Day Of Kindergarten

Trip To Grandma's

Now that school has ended for the year, Floyd and Emily headed to visit grandma in Illinois. Emily will be staying with grandma and her Uncle Earl for a month. Then grandma and Uncle Earl will bring Emily home. And grandma will visit with us for a month. So that she will be here when Nate is born.

Floyd and Emily had a few hours to kill in Washing D.C. before their next Amtrek train connection to Illinois. So Floyd took Emily sight-seeing. She had lots of fun. She especially loved the coursel in front of the Castle. I offered to take her to the local mall so that she could ride the coursel there, but she said "nah. It's not as fun." Here are a few pictures....

Fire Safety Week

This week is fire safety and prevention week. Our local fire departments take some time out of their busy schedules each day to visit the Pre-K and Elementary Schools in the area. Today the firemen came to visit Emily's Pre-K school. Unfortunately, I was not told in advance that the firemen would be visiting, so I wasn't able to get any pictures of Emily at school with the firemen, fire truck and the fire dog. But I did take the opportunity to snap a couple of cute pictures of her when she got home.

Mom: Can you tell me what you learned about fire safety today.

Emily; Yes, I learned I want to be an astronaut instead. Being a fire fighter is hard.

Mom: So what do astronauts do?

Emily: They go to out space.

Mom: Don't you think that being an astronaut would also be hard work?

Emily: Noooo silly. All they do is fly.

Mom: Wouldn't learning to fly be hard work?

Emily: Noooooo, birds do it all daaaay.

Official Start of School

Unfortunately I didn't get a picture this morning of Emily climbing aboard the "Big Girl" school bus. I had a question for the bus driver and Emily was soooo excited that she just pushed pass me and climbed on the bus. This will be Emily's first full week of Pre-K. Last week she only attended 1 day at "Big Girl" school. Our school district has what is called staggered enrollment, where only a few Pre-K and Kindergarten children attend school each day during the first week of school. Mrs. Maxey sends home a daily report and today's report states that Emily had a GREAT DAY! Emily says that her favorite part of the day was going outside to play on the playground.

Here are a few pictures that Mrs Maxey took on Sept. 2nd. and today, of the children learning while at play together. Sorry the pictures aren't very clear. The teacher uploaded them to a computer and printed them out for all of the parents.