Learning Together

        Since school started last July, Timmy has made wonderful progress in his communication skills. He is using a switch more consistently and is using words more to let us know his wants.

 

Looking back over the past few days, Timmy has taught me something that I have failed to realize up to this point. Some of his words have more than one meaning. For example when Timmy says "I more" which means I want more, this same phrase also means I want some. I came to this conclusion upon our arrival home on Friday following his surgery. Timmy's Home Health Nurse, Merry, was preparing Timmy's luch. As Merry sat down to feed Timmy she was describing Timmy's food to him, telling him what he was having, how good it looked, how good it smelled and how good mom said it tasted. Timmy said "I more" this was before Merry had given him his first bite of food. Having heard Timmy say this explained everything that transpired on Thursday evening as we were leaving town.

 

We stopped by McDonald's so that Floyd and I could get something for dinner. Had his dinner and bath before we set out for Durham. As we pulled away from McDonald's Timmy started saying "I more." I thought that he just wanted to play. So I assured him that after I finished eating we would play. Timmy immediately repeated "I more." Up to this point we hadn't had any interaction together. I had just made sure that his booster seat had been properly fastened in. That Timmy was securely fastened in and I placed his blanket over his lap.  I also explained to Timmy that we were going on a road trip and we would be staying in a hotel, so that we would not have to get up so early to be able to have him on time at the eye center for his surgery.  As I continued to eat, every few minutes Timmy would say "I more" or "Mama I more."This is the very first time that I have ever heard Timmy use a 3 word sentence. Yay Timmy! I have to say I'm so proud of him.

 

Now that I look back on this it really makes me feel bad. Knowing that Timmy was using the word "more" as a generalization which also means "some" I feels as though I deprived him of something that he may have really wanted. Did he really mean that he wanted some of my food? We will never know. If he was really asking and had accepted a fry, would this have been the time in which he would have actually have given a good effort at chewing? We will never know. It just saddens me to know that I was so ignorant and didn't understand his request. I feel as though in some small way I let my baby boy down. I deprived him of something that he may or may not have really wanted He was probably so confused because I didn't properly address his request in the proper manner. I just kept reassuring him that we would play soon.

 

I just hope that one day soon I'm granted the opportunity to have another chance of a full conversation with Timmy. And that I'm able to follow through with any request that he may have. I'm sorry Mama's Sunshine! I love ya! Keep up the good work with your communication skills. It may take those around you some time to figure out just what you are saying or requesting with the use of generalized words. But I promise we all will soon figure things out for you as well as ourselves..

Fw: Knock, Knock

 

        Knock, Knock! Who's there? Your Doctor. This isn't suppose to be a knock, knock joke. Wouldn't it be wonderful if in todays hectic and busy world doctors still made house calls? After this past week, I sure wish that they did.

 

On Monday, May 24th. I had next to my last ultrasound appointment at the peranatologist office. Nathaniel's growth is right on target with his gestational age of 29.5 weeks at the time of my appointment. His estimated weight was 3lbs 5oz. Everything looks great and Nathaniel is a very active little guy.

 

I also had an appointment with Mrs. Norma, a Lactation Consultant. I had thousands of questions about breastfeeding that she was more than happy to answer. My only experience with breastfeeding is pumping. I had the opportunity to pump my breast milk for Josiah during his short month here with us. It was a wonderful experience that I am so hopeful that I will get the opportunity of experiencing once again in full. With my other babies I was either told that I couldn't breastfeed, due to the eye medications that I was taking at the time. Which I have later found out not to be true. Or I didn't produce any breast milk, like in the situation with Timmy. Or I just didn't feel comfortable and the time just didn't seem right. The anticipation, thoughts and hopes I have of being able to strictly breastfeed Nathaniel arewhat is helping to keep my depression at bay.

 

On June 16th. I will have my first Non Stress Test. These will be preformed every 2 weeks alternating with a complete biophysical ultrasound to check on Nathaniel's growth and the amniotic level. My next scheduled ultrasound is on June 23rd.

 

Wednesday, May 26th was full of eye doctor appointments for myself and Timmy. I had an appointment with my Cornea Specialist. She is very pleased by the way my eye is healing. But she and the anesthesiologist are in agreement NO surgery to restore my vision until after Nathaniel's birth. Of course this news is disappointing for me. I try to see the positive side of the situation, Nathaniel's health and well being, my recovery time etc but this is hard at times, especially when my thoughts drift to the fact that I won't be able to see Nathaniel's precious face clearly at his birth. Floyd isn't the type of person to take tons and tons of pictures. So I'm hopeful that someone else will find it in their time and heart to fulfill this need for me during the time I am unable to see.

 

Three days prior to Timmy seeing his Occular Plastics Surgeon he had some bloody drainage coming from his right eye, which still has a conformer. It was our suspicion that the conformer had shifted and was no longer in the correct position within Timmy's eye socket, which was causing the bloody drainage, swelling and redness. Timmy's surgeon agreed that the matter had to be taken care of as soon as possible. So emergency surgery was scheduled for Friday, May 28th.

 

Timmy's surgery went well. Dr. Richard stated that in fact the conformer had shifted and was pressing against the inside of Timmy's eyelid. Thus this is what was causing the redness, swelling and bloody drainage. Dr. Richard said that he also had to remove a pus pocket. He didn't feel that this was a sign of an infection. He felt that it wasn't necessary to place Timmy on a round of antibotics. Dr. Richard instead prescribed Tobradex, which is an eye ointment which will aid in the healing o f the eye.

 

So in less than 72 hours we had logged about 650 miles. Anyone have any Preparation-H that they are willing to share?! LOL! If you know of anyone who continuously states that their life is boring, feel free to send them our way. I'm sure that after a week living in our shoes they will find their life more of a pleasure and not so boring.

 

Today Timmy's eye looks soooo much better. It really doesn't show any signs of him even have had surgery yesterday. This is the best that I have ever seen his eyes look after any surgery. His next scheduled surgery is on July 16th at which time Dr. Richard will take a different approach when removing tissue from Timmy's eye sockets in preparation of Timmy being able to get prosthetic eyes. During surgery someone from Carolina Eye Prosthetics will come to the eye center to measure Timmy's eye sockets. Probably within a few days following surgery Timmy will have an appointment at Carolina Eye Prosthetics when he will have new eyes made and fitted. Well this is how things progressed in January. So I'm only assuming things will proceed the same way this time as well.

 

At this time the only other exciting thing that is to come very soon is Emily leaving for 4 weeks to spend some time with grandma in Illinois. 10 days and counting....... 

From A Child's Perspective

        Yesterday Emily and I were playing with a geometric shapes puzzle. I was having Emily to name the different shapes. And we were discussing how many sides each shape has. There are 10-12 pieces to the puzzle. Each puzzle piece has a different color. One of Emily's favorite games with this puzzle is to match the colors. Even though each puzzle piece has a different color there is 2 shades of a color for the majority of the puzzle pieces. For example there are 2 different shades of blue and orange etc... Emily turned each puzzle piece over so that we couldn't see the colors. After taking turns trying to find matching colors. Once all of the matches had been found I pointed out to Emily that there were a few different pieces which didn't have a match. Emily piped up and said

 

 

 

 

 

 

 

 

 

 

 

 

]Oh that is ok if these are different shapes or colors. They can still be friends and play together." She then proceeded to pick up the unmatched puzzle pieces and put them together as if the puzzle pieces were hugging.

 

Why can't everyone in this world see things from a child's prespective? If we all could what a wonderful world we all would live in.....

 

After sharing this experience with Emily I can say I'm so proud of her for not seeing the differences in things and people. And her being willing and able to accept those who are different. I'm so proud to be her mommy. It also eases my fear that I have somehow failed to instill in her that all people are different but should be accepted and respected for whom they are on the inside not the out.

 

Today with the negativity from others and her peers at school I had been afraid that her outlook on those who are different would change, even though she has a unique needs brother.

 

Mommy Loves you Emily!

A Good News Day

        We had a meeting with Emily's Pre-K teacher yesterday, to discuss Emily's end of the year testing scores. Miss Emily has made great progress this year in all areas. Her final test scores show that she is testing 14 months ahead of her actual age.

 

In just 18 days Miss Emily and Floyd will be leaving for Illinois. Emily will be spending 4 weeks this summer with her grandma. Being that Emily will have one-on-one attention from grandma and grandma is wanting and willing to work with Emily on some academic studies, it is going to be interesting to see just how much more knowledge Emily will retain while out of school.

 

All I can say is Watch Out Teachers At Codington Elementary. Here comes Miss Emily....

 

Earlier this week we registered with FamilyCord to have Nathaniel's cord blood stored. This was a tough decision for us to make. There are so many companies which store cord blood, who to choose. We chose FamilyCord for several reasons. FamilyCord is run by a large team of Doctors and Genetist. Their facility has many accreditations. The company has a carrier service which will come to my hospital room soon after I deliver to pick up and deliver Nathaniel's cord blood to the FamilyCord Facility. The carrier service also insures the cord blood for up to $10,000 if they should mishandle the cord blood and it becomes contaminated or damaged in anyway. The company also offered a payment plan without credit approval. Our monthly payment is one that most parents can afford.

 

Before making this decision we spoke at length with Timmy's Endocrinologist Dr. Ali. After he explained to us that saving the cord blood would be a great idea, it wasn't absolutely necessary if we were doing so just in hopes of being able to help Timmy. Timmy's diabetes isn't the autoimmune form. His diabetes is most likely caused by his body not knowing what or how to process the insulin that his pancreas is making. This would be due to the cells of the pancreas malfunctioning. Being that Timmy's diabetes isn't autoimmune he would possibly respond with the use of donor stem cells. But with any stem cell transplant, it is best if the donor is a family member when possible.

 

We also took into consideration, that being Timmy has Down Syndrome, he is at greater risk of developing leukemia.

 

I know this sounds like our decision was based more for helping Timmy. This isn't true. We also took into consideration the benefits of being able to help our other children if necessary. No one knows what the future may hold. So best to be prepared for whatever the cards may be delt our way.

 

We have been working with trying to potty train Timmy for the past 6+ months. He has been making great progress. His adaptive potty chair from Rifton arrived yesterday. We all are so excited! Emily helped with setting up the switch that we will be using for Timmy to let us know when he is finished on the potty. We recorded the toilet flushing along with Emily saying "All Done. Finished" We are hopeful that one day Timmy will be able to either sign when he has to go potty and when he is finished or be able to verbally tell us of his needs

 

It is hard to believe that my little girl and little boy are growing up sooo fast. Where has the time gone...?.  

Nesting

Well, I have now entered the nesting phase of my pregnancy. I'm almost 29 weeks. Floyd has told me over and over that I have taken the nesting to extreme this time. What Floyd hasn't realized as of yet I have been using my nesting as a ploy to get the attic and other cubby holes in which we use for storage cleaned up, straightened up and junk that we don't need thrown out. So shhh lets not give away my secret until my nesting phase has passed or until we have finished cleaning out these areas. Not much more to clean. We have been very busy the past few days. A lot of the things that we are clearing out is in good condition. So we have donated the things to the Salvation Army. The hardest part has been giving away things that have a lot of sentimental value. But why keep it stored away when someone else may be able to get some good use from the things.

 

Have you ever heard that Unicorns are a symbol of fertility? This is what I was told almost 9 years ago by the Doc who preformed my tubal reversal surgery. I never realized until the past few days just how many stuffed Unicorns I had. If this is true, I guess it would explain my ease of being able to get pregnant.

 

I had an OB appointment today. Everything is going well thus far with this pregnancy. I have to start taking iron tablets once day because my iron level is on the low side of normal  Yuck!. My OB wants to prevent me from becoming anemic if possible I have gained 2lbs in 2 weeks. Yikes! I have another ultrasound scheduled for Monday, May 24th.

 

Even though at times I do get very depressed being I still am unable to see. I have to admit I'm very excited about being pregnant. And can't wait until the day that I'm finally able to hold our little guy. I>we still haven't been able to agree on a middle name for Nathaniel. I'm not sure why, but I have always found it harder to chose a boys name. Girl names just seem to come easy for me. The list has been narrowed down to the following names so far.

 

Andrew

Joseph

Michael

Ryan

Skylar

Sterling

 

Miss Emily suggest that we name her brother Michael. Michael is Josiah's middle name. Would it be approperate to use the name Michael for Nathaniel's middle name? Or would it make Nathaniel feel as though he was a replacement for the son we lost so soon? A lot to consider here.

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