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.

.

24.4 weeks pregnant

    I had another full anatomic ultrasound on Monday, April 19th. Our little guy measured right on target for 24 weeks. His estimated weight is 1lb. 10oz. The amniotic fluid level was great. And our little guy looks great. The echogenic cardio foci that was seen at 17 weeks wasn't seen during this ultrasound. My next ultrasound is scheduled for May 24th.

 

I had an OB>GYN appointments today. I have gained approximately 10lbs so far. Boy do I feel like it is more like 30lbs. I feel huge! Nathaniel's heart rate was in the 130's range. Being that my blood glucose levels have been creaping up the past few weeks, my OB>GYN raised my insulin dose. I now have to take 20u of Humilin-N along with 12u of Humilin-R in the morning and 10u of Humilin-N along with 7u of Humilin-R in the evening. I'm so proud of my self. With ALL of my other pregnancies my insulin dose would have been raised twice by this stage in my pregnancy. I have an appointment in 2 weeks with my OB>GYN to review my blood glucose levels following the increase of my insulin dose.

 

I guess my cravings in this pregnancy has played a very big part in my ability of being able to control my glucose levels. During this pregnancy I have absolutely no desire for meat of any form. Just the thought of meats makes me feel nauseous. It isn't the smell of the meats cooking. Honestly, I'm not sure why I'm turned off to the thought of meats. Before I got pregnant I could eat chicken 3 times a day. But even chicken is a turn off. All I want is Fresh Baby Spinach topped with a lot of black pepper and lite Cesar dressing. Any other fruits and veggies are a must as well. Also a baked potato with chaddar cheese, butter, sour cream, salt and pepper. Like the saying goes; Each pregnancy is totally different.

 

Here is a list of my cravings with my previous pregnancies....

 

1st. pregnancy:  Pickles>cucumbers and peanuts

2nd. pregnancy:  Apple Pies and French Fries. These HAD to be bought from Hardee's

3rd. pregnancy:  Cottage Cheese and any food with Tomato Sauce

4th. pregnancy: Hawaiian Pizza topped with Ranch Dressing

5th. pregnancy: White rice. Sometimes I would add spinach and tuna to the rice.

6th pregnancy: Chex Mix tons and tons of the stuff

7th pregnancy: Icee's especially cola flavor. Now this one was strange as well being I hadn't had an Icee in many, many, many years.

 

We are really starting to get excited about this pregnancy. Especially now that we have been reassured with 2 ultrasounds that everything looks good. And I have now reached the point in my pregnancy that if something should go wrong our little guy has a fighting chance at survival.

 

We are thinking about nursery themes. And planning a day out in the near future to buy baby clothes, a car seat, stroller and other necessary essentials.

 

Also we are still trying to agree on a middle name for Nathaniel. Why does it seem so much simplier to choose a girls name verses a boys name?

Now That One Door Has Completely Closed....

It has been 8 1>2 months since Timmy had his trach removed. On Friday, April 9th, Timmy had surgery to completely close his trach stoma, ear tubes replaced and the ENT scoped his airway to make sure that everything looked good. Surgery went well. It was a bit more advasive than we thought that it would be. The ENT surgeon had to remove scar tissue from Timmy;s airway in or to place stiches for the stoma closure. Also a rubber band drain had to placed to help any trapped air excape and for drainage to come out. So Timmy had to be hospitalized overnight for observation just in case he may have developed a collapsed lung.

 

Today was Timmy;s 1st day back to school following his 3 week Easter break. He seems to be doing well, except for some minor pain. He also refuses to cough deeply enough to completely clear his airway. So this is a sign also that he is still in a bit of pain. Timmy is a tough little guy. He has endured so much over the past 6 years of his life. and bounced back pretty fast. I;m hopeful that with all of the attention and love that he receives from home, his home care nurses, his friends and teachers at school, he will bounce back fast from this surgery as well.

 

Timmy had been scheduled to have surgery later this week to circumcise him and descend his testicles. After some though, consideration and consulting Timmy's ENT surgeon, we have made the decision to pospone the Urology surgery for about 2 months, to give Timmy;s airway time to completely heal.

 

In this family, we never do anything without a challenge. Timmy should be ready for surgery around the time that Little Nathaniel is due to be born. So our challenge will be to schedule Timmy;s surgery, any post-op visits and my C-section in a timely manner. Oh yeah, Emily is suppose to go visit with Grandma in Chicago for a month beginning the 2nd week of June. So we also will have to figure out in the travel time for Floyd and Emily to get to Chicago and Floyd;s return trip home. Think this is enough? Oh no. There will also be 1-2 OB visits for me that we will have to find somewhere to squeeze in our ever building schedule. Are you bored? Come spend a month with us and travel to all of our appointments and I;ll bet you after that month you won;t complain about being bored again.

 

On a brighter side, now that the door in our journey with Timmy with a trach has completely closed I;m sure that another door will open offering Timmy many adventures and life experiences which we have had to put on hold due to the trach..

 

No more trumpeting Elephants. What? you may be asking. This is something that all of us especially Timmy is going to miss. Before the surgery to completely close the trach stoma, if>when Timmy would push air up through the trach stoma it would make a noise that sounded like a trumpeting elephant. Timmy would spend many, many, many minutes a day just making this noise, which would send him into fits of hysterical laughter. And when Timmy laughs his laughter is so contageous that if you around him there is no way that you will be able to keep from laughing along with him.

 

So now comes his and our new adventure in trying to teach Timmy how to make the trumpeting elephant sound just by using his mouth. iF HE DOESN;T LEARN HOW TO DO THIS i;M SURE THAT HE WILL FIND A NEW NOISE PAST-TIME TO KEEP US ALL ENTERTAINED. i;M LOOKING FORWARD TO THIS.....

Middle Size Adult

Timmy;s CAP-C case manager stopped by our house earlier this evening for her quarterly visit. Emily came into the house, from visiting grandma, while Timmy;s CAP-C case manager was here. Several times over the past year or so the case manager has brought her son;s retired service dog to our house for Timmy and Emily to play with. The kids really enjoy playing with Sylvia.

 

Emily: Hi! Can you bring your dog over so we can play?

Cse Manager: maybe later after she gets groomed. The last time I had Sylvia groomed, I was sick and your mom and dad says I can't come to play when I'm sick.

 

Emily: You;re not sick now. So can you bring your dog over next time so we can play?

 

Case Manager: I have 2 dogs now.

 

Emily: Can you bring your other dog over too?

 

Case Manager: My new dog is a poodle and she has very curly hair like yours, but her hair is black.

 

Emily: So...

 

Case Manager: My new dog doesn't like kids.

 

Emily: (Puts hands on hips and sighs deeply) I'm not a kid.... I;m a middle size adult!

 

Well I guess that explains why she thinks that it is ok to boss around her 14 year old borther.....

A Long Update On Us...

WARNING...This is going to be a very long update. So please feel free to go to get yourself a snack. I will wait on you...

 

"The sun will come out tomorrow. Bet your bottom dollar that tomorrow there will be sun. Just thinking about tomorrow chases away the cobwebs and the sorrow. Come what may..."           

 

Ok glad to see that you are back. I hope that my singing didnt frighten you. Lets get started...

 

Feb. 23rd. Timmy went to UNC for a sleep study. We wont have the results of this sleep study until the day of Timmys surgery on April 8th. I have a suspicion that the results wont be very good because the evening after the sleep study it was discovered that Timmy had drainage from both ears. This is a good indication of an ear infection. On Feb. 25th we took Timmy to see the Pedi and the Pedi diagnosed Timmy with bilateral ear infections. The Pedi Rx 10 days of Omniceph. After the 10 days the medication had absolutely nothing to clear up the ear infections. So we took Timmy back to see the Pedi and sure enough he still had bilateral ear infections. This time the Pedi gave Timmy 2 doses of Rocephin on two consecutive days. This also didnt clear up the ear infections. We once again took Timmy back to see the Pedi and this time he Rx Augimentin for 10 days. This has seemed to have cleared up the ear infections. On April 8th Timmys ENT will be doing surgery to completely close Timmys trach stoma, replace the ear tubes which came out during Timmys month long bout with ear infections and he will be taking a good look at Timmys upper and lower airways to make sure that everything looks good.

 

On March 3rd. Timmys prosthetic eye came out yet again. And we were unable to get it back in. I feel that not only the build up of scar tissue, but the ear infections had played a small part this time in the prosthetic coming out. During his bout with ear infections Timmy had a lot of yucky yellow-green drainage coming out of both of his eyes. Thank goodness this all cleared up on its own when Timmy was given the antibotics to try to clear up the ear infectins.

 

On March 18th we took Timmy to see his Orbital Plastic Surgeon. He feels that at this time we still have a chance to possibly get the prosthetic eye to stay in place. He has decided to try a little something different this next time that he takes Timmy into surgery to clear away the scar tissue. In the past hthe surgeon had just been removing the scar tissue from around the upper and lower eyelids in hopes that this would hold the prosthetic eye in place. But Timmy forms scar tissue so fast that the scar tissue just pushes the prosthetic eye out and replacing it is impossible because there is no room in the eye socket because of the scar tissue. The next time Timmy goes into surgery the surgeon will try removing some of the fatty tissue from the eye socket to make room. By removing the fatty tissue this will create depth in the eye socket and hopefully give the prosthetic eye a place to settle into. If this procedure doesnt work, I think we may just call it quits on trying to get prosthetic eyes for Timmy. Like I stated in a previous post, Timmy having eyes or not doesnt change the way we love or care for him. And who really cares what the majority of people think about Timmy not having eyes. Him knowing that his family accepts him just the way that he is is the most important thing.

 

Floyd and Timmy left for NIH on March 21st, so that Timmy could participate in the WAGR syndrome study that NIH is doing. WAGR syndrome is a syndrome that in some cases has been linked to our particular gene mutation. The 2 most important things that was learned from Timmy's participation in this study are;; The Drs feel that Timmy would make a good candidate for a stem cell transplant. The stem cell transplant could help cure Timmy of his diabetes. Timmys body produces insulin, but somewhere along the way his body doesn't know exactly what to do with the insulin that his pancreas is secreting. The thought is that there is cells in his pancreas that isnt working properly and this is causing Timmy to have diabetes.  The second and most important issue that needs adressing at this time is the enlarged heart and the fact thAT THE BLOOD FLOW INTO tIMMYS LUNGS IS AT 180% AND IT SHOULD BE ONLY 100%. tHE BLOOD FLOW FROM THE LUNGS INTO THE HEART IS NORMAL AS FAR AS THE cARDIOLOGIST COULD TELL ON THE ECHOCARDIOGRAM WHICH WAS PREFORMED. sO WE ARE LOOKING FOR A GOOD pEDS cARDIOLOGIST AT dUKE mEDICAL cENTER. tHE cARDIOLOGIST THAT tIMMY HAS BEEN SEEING JUST DOESNT SEEM VERY CONCERNED ABOUT tIMMY. iN MY OPINION, i FEEL THAT THAT THE cARDIOLOGIST FEELS THAT tIMMYS QUALITY OF LIFE JUST DOESNT MEET HIS EXPECTATIONS. aND IF A MAJOR CARDIO PROBLEM SHOULD ARISE THE cARDIOLOGIST WOULD JUST REFER US TO ANOTHER cARDIOLOGIST ANYWAY.

 

Im just so happy to have my 2 boys back home. Life without my little Sunshine and morning cup of coffee just depressing and almost unbearable.

 

We had Timmys IEP meeting on March 8th. Timmy has made great progress this year. He is exploring more using both hands, learning to make choices, using a switch for communication and just loving his classmates and teachers. Even though his progress can only be measured in "inchstones" just to know that he has made these gains is more than anyone would have ever guessed that he would be able to do.

 

I give 100% of the credit of these small gains to Timmys teacher. She is the most WONDERFUL  person that I have had the opportunity to have met. She really gets to know each of her students. She looks for the most suttle of communication cues like a smile or a giggle which may indicate "yes." She gives each of her students one-on-one quality time for academic learning. I could keep going with all of Timmys teachers good qualities, but Im sure that you get the idea. I have absolutely nothing bad to say about his teacher. Im just so happy that Timmy will have this same teacher for the next 5 years of his elementary school experience

 

On April 14th Timmy will be having surgery with his Urologist. At this time the Urologist will be circumcising Timmy and descending Timmys testicles. We have been told that this could be a rough surgery for Timmy given his age. We are hopeful that things go well and that he doesnt have much pain. When Timmy has a lot of pain from surgery this causes him to be under a lot of stress. The stress in turn causes Timmys blood glucose levels to rise and sometimes become almost uncontrollable

 

Now for the update on me....

 

I had my first anatomic ultrasound on March 1st. Im happy to announce that I am expecting a little BOY!!!! So I guess the unscientific low heartrate indicating a boy, a high heart rate indicating a girl is just that an Old Wives Tell. And the IntelliGender test that I took when I was about 10 weeks was wrong. I took the test just for fun anyway. At the time of the ultrasound I was 17.4 weeks pregnant. The baby measured right on target and weighed 7oz. His brain looked remarkable and everything else looked good as well. The only thing that was seen that is concerning is a bright spot on the babys heart. This echogenic foci is a marker for Down Syndrome. All of my other prenatal testing for chromosonal defects have come back normal. My Genetic Counselor informed us not to stress out and worry too much about this. She indicated that this same marker is seen a lot without the baby being born with Downs. I was offered the opportunity of an amniocentesis to confirm the possibility of Downs, but I declined. Having the results confirmed will not change anything with this pregnancy. Once the baby is born a simple test can be preformed to confirm the results of Downs if necessary. In my opinion there isnt any reason to chance an amniocentesis which could pose problems with the pregnancy. Having another child with Downs and special needs will only add challenge to our lives. We will love and care for this baby just as much as we do Timmy either way, with or without Downs. My next ultrasound is scheduled for April 19th at which time I will be 24 weeks. The ultrasound tech will be doing another full anatomic scan.

 

I have saved the worst news for last in this update. On Feb. 27th my Keraprosthesis failed. When I went to bed the night before everything seemed fine. When I awoke at about 6AM I was unable to see anything. I had to have emergency surgery to try to save my eye. Upon the eye surgeon taking me into surgery it was discovered that when the Keraprosthesis detached it caused a hole in my eye. My optic nerve could be viewed without the special glass and light that the eye Drs use to examine the back of the eye when a patient is in the office. I was told when the optic nerve can be seen with the neaked eye this isnt good. So the surgeon was unable to remove scar tissue or replace the keraprosthesis. The surgeons only option was to use a donor cornea and tissue to repair my eye. Being that the scar tissue wasnt able to be removed it has left me with only light perseption and shadow vision in my left eye. I havent been able to see out of my right eye in many years due to a very mature cataract. It seems as though everytime the Dr. gets my left eye stable enough for us to start to consider operating on my right eye something major happens to my left eye to set surgery on my right eye back.

 

Thank goodness Floyd was able to get his hands on a full copy of ZoomText, which is a text to speech program. This program cost $1,000. Floyd is still trying to get the program settings correct so that Im able to use the program for reading and writing emails as well as surfing the web.

 

Not being able to see is very depressing and stressful. I hate not being able to take care of my own needs like check my own blood glucose levels, draw up my own insulin injections or see the colors of my clothes so that I can pick out what I want to wear independantly. I hate not being able to see to care for Timmys medical needs, play games, read books to Emily and write with her or see to read for pleasure. Reading is my life. There isnt anything in my life that I enjoy doing more than being able to read for pleasure or do research on the internet.

 

It has been almost 6 weeks since my eye emergency and Im starting to find it harder and harder each day not to sink deeper and deeper into depression. I try to think of and find something positive about this situation, but staying focused gets harder with each passing day. If it wasnt for Floyd who has been my shoulder to cry on, my sounding block when I feel so frustrated and just vent and my rock, I dont think I would have been strong enough to make it this past 6 weeks alone.

 

I had an appointment with my Cornea Specialist on April 1st. we discussed the possibility of her doing another keraprosthesis a few weekes before the baby arrives. She stated that being eye surgery is considered an elective surgery, she wasnt certain if the anesthesiologist and the other team members would agree to letting me undergo an elective surgery while pregnant. She agreed to speak with everyone to see what she could do. My next appoointment is scheduled for May 13th hopefully by this time she will have had a chance to speak with everyone and have an answer.

 

The hardest part about not being able to see is knowing that if surgery isnt possible before the baby arrives I will not be able to see his sweet face upon his birth and Im doubting my ability to be able to care for a lot of his needs.

 

Life is so unfair! People have told me that everything in our lives happens for a reason, but for the life of me I cant see or figure out the reason for this happening to me at this time. Pregnancy is suppose to be a happy time in a womans life, but for me it has been filled with sadness, depression and stressful.

 

Ok I have to move on before I find myself getting to emotional. So on a happier note to end this post. I have chosen a name for our little guy. His first name will be Nathaniel. I cant decide on his middle name. The 2 names that Im considering are Ryan or Joseph. Which do you like the best?

 

Nathaniel Ryan

Nathaniel Joseph

 

Looking for suggestions of other names also.

 

Bad Hair Day!

This is Timmy upon arriving home, just before his bath to remove the glue that was used to keep the electrodes in place for his sleep study last night. Daddy reports that Timmy cried when the tech was placing the electrodes on his head. I would have cried too if I knew that the next morning I was goonna look like this.

Who;s Sentimental?

Meet Scratchy Bunny

Timmy received Scratchy Bunny for his 1st Easter, at 5 months of age. Timmy hasn't been seperated from Scratchy Bunny over the past almost 6 years. He sleeps with him and plays with him during the day. Scratchy Bunny has been with Timmy during every hospitalization and sleep study. Scratchy Bunny is made from a rough, coarse material. I believe this is one reason that Timmy loves Scratchy Bunny so. Over the past almost 6 years, Scratchy Bunny has had to undergo many repair surgeries to help keep him in tact.

Tonight Timmy and Daddy are at UNC for a sleep study. Dr. Z (ENT) requested the sleep study to make sure that Timmy is doing well at night with his breathing, before he takes Timmy into surgery in early April to surgerically close Timmy's trach stoma.

This time Scratchy Bunny did not go along. This was my decision. I now feel so terribly bad, because I feel like I have let Timmy down by having him to leave his favorite toy which has always been with him behind. I know that I'm the only one who feels bad and is upset that Scratchy Bunny isn't with Timmy. Timmy has other stuffed toys which he likes just as much as Scratchy Bunny. He has a soft giraffe and 2 GUND stuffed toys, a tiger and a monkey. Both the tiger and monkey are made from a coarse, rough material, but not the same as Scratchy Bunny.

Timmy took Melman, his giraffe along with him tonight for the sleep study. When Daddy called, he said that Timmy was all tucked in with Melman and on his way to dreamland.

So why do I feel so terribly bad? Maybe it is because I'm scared to pack Scratchy Bunny away. I'm afraid that if Scratchy is packed away I'm also putting away apart of Timmy's past in which has been physically and emotionally difficult at times, but yet precious and rewarding. I fear that if I do give in and pack Scratchy Bunny away, I'm admiting that I'm willing to let my little boy grow up. That I'm mentally and emotionally ready to completely put the past behind and dive head first into a future with Timmy which will most likely be filled with uncertainities and no true direction. Scratchy hasn't only been Timmy's security toy, but it seems that he has been mine as well.

So will I give in and pack Scratch away? Right now I'm too upset to answer. Maybe tomorrow or one day in the near future both Timmy and I will together agree and put Scratchy away. But for now Scratchy is awaiting Timmy's return laying on Timmy's pillow.

After dinner and a bath, Emily and I spent some much needed and deserved quality time together. We read Emily's school library book, which Emily really enjoyed.

The book is about a little boy who made a sail boat from a pencil, a cork and some cloth. The boy took his boat to the lake one day to play. He held tightly to a string which was attached to his boat. A storm came up and he accidently let the string go. The storm took the sail boat far out onto the lake. Where the small sail boat encountered many different larger boats. A fishing boat came along and helped the small sail boat back to shore, where it was reunited with the boy. The samll sail boat and the boy both were so excited to once again be back together.

After reading the book, we cuddled and rocked while watching what seemed like a zillion episodes of SpongeBob! That is one CRAZY cartoon. Emily went to bed without any fussing or excuses for needing to get up.

The perfect endong to a beautifully warm day!

Two Doctors Appointments Today

On the road again. That is how it seems to be here lately. Taking Timmy to see a doctor about once or twice a week. Timmy is a very healthy child. So it would seem that he wouldn't have so many doctor visits. But somehow he does. I guess we should count our blessings that Timmy is so healthy and just start enjoying the looong car rides.

Timmy's medical team of doctors consists of Neurologist, orbital plastic surgeon, occularist, ENT, Endocrinologist, Cardi0logist, Urologist and Pulmonologist. These doctors are divided between our tow large state hospitals, Duke and UNC.

We left home around 9:30 for our 1st appointment at 12:30 with Endocrinology at UNC. Timmy has the WORLD'S GREATEST Endocrinologist!!!! Dr. Ali took time out of "his" busy schedule to make time to see Timmy. Most doctors would ask that you just schedule an appointment when they are seeing their patients in clinic. But Dr. Ali made time to see Timmy outside of scheduled clinic time.

Dr. Ali is very happy at how well we have been managing Timmy's blood glucose levels. Sshhhh, don't tell Timmy this, but we have him figured out to the point that we are able to keep his blood glucose levels pretty stable, between 70-170mg/dl. Now if Timmy should happen to hear anyone say that we have him figured out his body would surely find a way to throw a wrench into the mix to throw us off. So there were no insulin dosage changes necessary. Unfortunately Dr. Ali hadn't yet received the results to Timmy's blood work from Feb. 9th. As soon as he gets the results he will call us and let us know if we need to increase Timmy's thyroid medication. We are anxiously awaiting the results to Timmy's cholesterol level. Dad has taken it upon himself to make ALL of Timmy's meals each month from scratch, cutting out excessive preservatives, fats and cholesterol. Timmy has also been getting CorOmega 1x a day.  Due to the mutation in Timmy's PAX6 gene, he is predestine to have elevated cholesterol levels, which can not be controlled by diet or medications. We are hopeful that being Timmy NEVER plays by the rules of any Medical Game, we are able to beat the odds and CAN control his cholesterol at least a little with diet and medication.

Our 2nd appointment was with ENT. Dr. Z was very pleased at how well Timmy is doing since his trach was removed in July 09. We told him that Timmy very well with his 1st upper respiratory infection. We discussed what we would like him to do when he takes Timmy into surgery in early April to close the trach stoma. I asked if he would look at Timmy's upper and lower airway to make certain that everything looks good before he completely closes off the stoma. And look in Timmy's ears and clear out any wax and replace the ear tubes if necessary. Dr. Z wants another sleep study before surgery to make sure that Timmy isn't having any trouble while sleeping. So this has been scheduled for Tuesday, Feb. 23rd. Even though Timmy's trach stoma is still open, it is not open enough that Timmy is able to pass any air through the stoma. So pray that everything goes well with the sleep study so that we are able to proceed with the surgery to close the trach stoma.

After all was said and done, we made it back home a little before 7:00pm.

I can't believe it, but Timmy does NOT have any doctors appointments in March. Lets not tell Timmy because if he knew this he would find someone to go see. I can't remember this EVER happening before. What we do we with all of the extra time we will have on our hands???

Mid Year Testing

I apologize for being a bit behind on getting this posted. But we have been busy with Doctor appointments and the such. That Floyd just has had a chance to scan and upload Emily's Mid Year Test Results.

We have been luck this year so far with Emily. She has been very healthy and hasn't had to miss any time from school due to illness. The 6 days that she was absent from school was the extended vacation days which we allowed her to take so that she could go with Daddy to visit Grandma over Christmas break.

As you can see from the graph below, Emily has made great progress in all areas since the beginning of the school year. She is testing At or Above her age level.

The top green boxes contain the scores from the "beginning" of the school year. The bottom row of green boxes reflex Emily's Mid Year Test Scores. Note the red boxes in each row? These indicate where Emily incorrectly answered a question. Once she fails to approperately answer 3 questions in a row that part of the test is complete.

The only real problem which Emily's teacher addressed with us, is the fact that Emily is unable to stay focused on what she is suppose to be doing. Emily is too curiouus as to what the other children are doing and she wants to help them on their work/project.

We were given the "core" words that Emily will be expected to know next year. So that we can start helping her work on them. The teacher also sufggested that we continue to encourage Emily to practice her writing skills. She also gave us a few very good websites that the school uses for the children in the computer lab, that Emily really enjoys exploring and learning from.

Emily is a very happy, birght, curious, creative, imaginative, and caring little girl. Now if only I could convince her to keep her room cleaned up from all of the toy clutter!

Happy Valentine's Day

As a parent, one of the most enjoyable things about having a child in
school is the artwark that they make at school and bring home to share.

Here is a beautiful example of this. Timmy made his Dad and I a Valentine's Card. The report that comes from school, is that Timmy didn't complain once for having to use the glue to make this card. He usually HATES to use glue. And will have a Timmy Tantrum if asked to use glue.

Happy Valentine's Day Mama's Sunshine! I Love You!

Unfortunately the Pre-K class that Emily is in, there are children who do not believe in celebrating ANY holiday. So the teacher has to keep all holiday crafts, celebrations and talks to a minimal.

I do have a cute story to share that goes along with Valentine's for Ms. Emily. This is the story that Emily's teacher retold to us during our meeting on Tuesday to go over Emily's mid-year testing scores. (More to come on this later.)

In light of Valentine's the teacher decided to do some lessons on what it means to be kind. What is a friend. And what is love. During her lesson on Love as a class they were discussing different way that you can show someone that you love them. And talking about love songs. The teacher mentioned Barney the Dinosaur's theme song as a love song. And she asked the class for other love songs. Several other students mentioned love songs that were their favorite. Ms. Emily raises her hand with excited enthusaism and say "Mrs. Maxey, I know a Love song too!" Mrs. Maxey says "Ok Emily why don't you share." Emily replies "Love Stinks from ICarly!"

Happy Valentine's Day to all......

Snow?

To A Very Special Little Man. He's With Me

"She's With Me" by Collin Raye is a song that he wrote for his granddaughter, who has a debilitating neurological disorder, which has yet to be diagnosed.

Even though this song is written from the prespective of a grandpa to his granddaughter, I feel that it serves as a tribute to each and every special needs boy and gril and to their parents, guardians or caregivers, who spend every waking moment with the endless energy, strength and patience caring for those whom they love without ever a second thought or regret as to their loved ones disabilities.

Timmy you are my inspiration, my hero, my morning Sunshine with your big bright smile and contageous laughter and my little man. You make me so proud with every thing that you do.  Mama loves you!

Routine OB Appointment

I had a routine OB appointment this morning. I'm 14.6 weeks. I have gained a whopping 8lbs since I became pregnant! Man it sure feels like more! But in my opinion at this stage in the pregnancy 8lbs is ALOT of weight to have already gained. My Doc hasn't said anything negative about my quick weight gain, so I guess it is ok for now at least.

My blood glucose levels are still well controlled by diet and a minimal amount of insulin. So far the Doc hasn't had to increase my insulin dose. My goal is to see just how far into this pregnancy I can get before the dose has to be increased. 

Want to talk about a stubborn and active baby?! This baby moves around so much that my Doc has yet to be able to use the doppler to find the baby's heartbeat without first using the ultrasound machine to confirm the baby's position. S/he is a placenta huggeer which makes picking up the baby's heartbeat very difficult. Today dad was sooo hopeful that the Doc may be able to get a quick glimpse of the baby's sex, being she couldn't find the heartbeat by first using the doppler, but no such luck. 1. The laptop ultrasound machine isn't very good quality. 2. The little poppy seed was moving all over the place. 3. His/her legs were crossed making the process of trying to get a quick peek unsuccessful. So unfortunately dad and grandma will just have to muster up some more patience for the 2 BIG ultrasound in a little over 2 weeks. Hopefully for their sake the baby will cooperate. Personally, I think that waiting and not finding out until the delivery would be kinda cool. I just love surprises! But unfortunately Dad doesn't have another 23 weeks of patience left in him... sigh....

Eye Surgery Today

Timmy had eye surgery today with Dr. Richard, so that Dr. Richard could get a better look in Timmy's eye socket to see exactly why we haven't been able to reinsert Timmy prosthetic eye.

Well of course this being Timmy. His body had created scar tissue in the eye socket. Why? Not sure being that when the prosthetic mold for his eye was made on Jan. 22nd Dr. Richard did absolutely nothing, but remove a conformer that was in his left eye and replace it with a fresh one until our visit with the occularist on Manday Jan. 25th.

Thankfully Dr. Richard was able to clean away the scar tissue, replace the eye and suture it shut with dissolvable surures, whic should dissolve within 2 weeks. But then again Mr. Timmy is also Mr. Hands. And he LOVES to self stimulate and rub his face/eyes. So we shall see just how long the sutures stay in place. Hopefully the full 2 weeks. This way Timmy;'s eye socket will have a chance to conform to the shape of his prosthetic eye and we won't have so much trouble reinserting the eye if it should happen to come out again.

Aside for a little bloody drainage. Timmy came through surgery well. And we were able to keep his blood glucose levels well managed. Of course if Timmy heard me say that, he would surely throw a wrench into the mix next time for sure! Praying there isn't a next time too soon into the future.

A Day Filled With Doctor Appointments

Today was a day filled with Doc appointments for Timmy. I guess I shouldn't really complain. If we took away the wait time in between each appointment the total time it took to see 3 different doctors was only 2 hours. Not bad for a hospital clinic.

Timmy's 1st appointment was with GI. Timmy weighs 36lbs and is 38in tall. We went over the upper GI test results that were preformed in Mid December. Of course the test showed that the Nissen was fully in tact. Then why are we seeing some minor reflux, especially when Timmy is up and being active? Or when I give him his nightly snack via his G-tube at night? Or why is Timmy able to burp so frequently? The only explaination the Doc had was that maybe Timmy needed to be vented more. Geez, the child gets vented every 2 hours! So I don't think that this is the underlying issue.

Timmy is currently taking 15mg of Prevacid 2x a day. The Doc suggested that we cut the dose to only 1x a day to see what happens. He felt that maybe the double dose of Prevacid may be masking some underlying cuase. Kinda makes sense to us. We are willing to try anything if it leads us to the problem so that we can come up with a solution to the problem. We are to call if we notice more frequent burping, reflux that is more than just a small "burp up" of food or if Timmy seems to be uncomfortable without the 2nd dose of Prevacid. Otherwise our next appointment is in a year.

Timmy's 2nd appointment was with urology. After 3+ years, I'm not sure if it was fate or our persistance in finding a doctor who was willing to circumcise Timmy and possibly descend his testicles which finally lead us to Dr. Ross. But anyway she is great. She is concerned about Timmy's health despite all of Timmy's underlying complex medical issues. She has Timmy's best interest at heart. She has a very good bedside manner. And she is very compassionate.

We discussed in further detail about her circumcising Timmy and during the same surgery descending his testicles. She feels that even though Timmy will not benefit from the fertiltiy benefit of having his testicles descended, (who knows what 15+ years into the future holds for Timmy) he will most definately benefit as far as a slighter chance of him developing testicular cancer, caompared to the higher risk of the cancer if his testicles weren't to be descended.

So as of now, Timmy has a pre-op visit scheduled on April 13th at 2pm with surgery to follow on April 14th. She has requested that Timmy be placed as her 1st surgery patient of the day. And we are all keeping an open mind as to whether this surgery will be done on an outpatient basis. She says if there is even the slightest issue that arises she will admit Timmy to the hospital for observation overnight. Awww, how sweet! Now if all doctors could be that concerned and caring about their patients, what a wonderful world this would be.

Luckily we were able to get Timmy in to see his orbital plastic surgeon on a walk in basis. We felt that being we couldn't get Timmy's eye back in that possibly there could be some scar tissue that had formed in his eye socket. The surgeon looked and from what he could tell this isn't the case.

Dr. Richard tried, but was also unsuccessful to rreinsert the eye. So the plan is for on Wed. Feb. 10th Dr. Richard will take Timmy to the OR and reinsert the eye under anesthesia. He then will suture the eyelid. So hopefully this will help to keep the eye in. The sutures will remain in place for a month or so. At which time we will have them removed. Hopefully by that time Timmy's eye socket will have had time to adapt to the prosthetic eye and have had a chance to grow larger. Making replacement of the prosthetic easier for when we have to replace it. Of course we will definately get that most challenging opportunity again soon, I'm 100% sure.

After our visit to the surgeon, I'm now convinced that Timmy is playing the sympathy card on us to get us to STOP and LEAVE him alone when we are trying to reinsert his prosthetic eye. At home he SCREAMS and CRIES, as if someone is chopping off his head with out any anesthesia. But when Dr. Richard tried to replace the eye, Timmy DID NOT scream or cry. He did tense up a bit and he became more vocal. BUT no screaming or crying. Dr. Richard used the exact same procedures to try to reinsert the eye as we do at home. He used a few numbing drops in the eye socket. He added some antibotic ointment and he lubricated the eye. All the while Timmy is sitting in Merry's lap (Timmy's Home Health Nurse) and she was restraining his arms/hands. But NO screaming or crying. Go figure!

Ok I will admit I'm proud of Timmy for not screaming and crying. He just showd us just how much of a big boy he can be when he needs to be.

Looking on the bright side of this whole situation. Boy are we lucky that we get to have a chance to deal with just one eye at a time. At least this eay we have a chance to trouble shoot any problems and become a pro at replacing only 1 prosthetic eye beore we have to take on the challenge of dealing with both eyes.

The next while at home that we have the pleasure of trying to replace Timmy's prosthetic eye, I hope that he will find it in his heart to grant us the same pleasure that he did Dr. Richard. And let us keep your sanity, nerves and our eardrums!  We shall see. So check back for updates.

What Is Normal?

Now that I have had the opportunity to calm my serves, relieve some stress and dry my tears, I find myself asking, What Is Normal? Does Normal apply to what the parent(s) want and feel is best for their disabled child? What the child who is disabled may want or feel is important to them? Or for what society as a whole feels a child or adult with a disability should be to fit into society?

The dictionary's defination of Normal is as follows;

–adjective 1. conforming to the standard or the common type; usual; not abnormal; regular; natural.
2. serving to establish a standard

The Biology, Medicine, Medical defination of Normal is;
 
a. free from any infection or other form of disease or malformation, or from experimental therapy or manipulation.
b. of natural occurrence.

This past week has been a week from HELL for me, mentally and emotionally. I/we want so bad for Timmy to have eyes so that he fits into the "norm" or what society sees as normal. If for no other reason so that people don't point, laugh, ridacule and stereotype Timmy when we have him out in public. But who is really getting hurt here? Who's feelings are we really trying to protect, ours or Timmy's?

Different people including doctors have their own opinion as to whether having artificial eyes are strictly necessary, so that the face doesn't become deformed. Or if it is strictly cosmetic and an esteem booster. We are torn as to which opinion is true. We definately don't want to withhold treatment if it is possible it may cause Timmy's face to become deformed. And if it is strictly cosmetic and an esteem booster, who are we really helping here?

Timmy received his left artificial eye on Jan. 25th. The first couple of days went well. He kept the eye in place. On Wednesday Jan. 27th, with a big yawn, Timmy managed to pop the eye out. Timmy's home health nurse was able to get the eye back in without any problems. Sometime after Timmy was put to bed on Thursday night or early Friday morning upon Timmy's awakening, he manages to get the eye out. So Timmy's nurse was unable to get the eye itself back in, but managed to get a conformer into the eye socket to help hold the eye socket open. Throughout this entire process Timmy is screaming and crying in protest. Does replacing the eye or the conformer hurt? Or is the screaming and crying only in frustration and our "Drama King's" way of seeking sympathy? I don't know. It is possible it could be a little of both, but being that Timmy is unable to tell us, we can only assume that yes trying to replace the eye or the conformer may be a bit uncomfortable. We were able to keep the conformer in place and we replaced the conformer with the eye Sunday morning. During this process Timmy screamed and cried. Late last night after we put Timmy to bed or early this morning the eye came out. We were unable to get the eye back in, but managed after an hour of off and on trying, we finally got the conformer in. While at school, just before it was time to come home, Mr. Hands (Timmy) used his finger and poked the conformer out once again. His nurse tried and was unsuccessful to replace the conformer. When they got home, Dad put a call into the Doc. But being there is an ice storm, they clinic is running a skeleton crew and Timmy's Doc and his fellow was unavailable to offer any advice or suggestions. Being the pack rat that I am, I had saved previous conformers that had been placed during surgical proceedures but had subsequestly along the way been poked out by Timmy or worked their way out on their won, due to the body rejecting them. Through some screaming and crying from Timmy, myself and Timmy's nurse managed to get the smallest of conformers back into his eye socket.

Being that the eye or the conformer has been removed and replaced sooo many times in this past week, Timmy's eye is all swollen and red. I ask myself what are we accomplishing by causing him pain, discomfort and trauma?

I usually see myself as a mom who is strong willed, stubborn, with lots of determination, and the will to keep trying until I succeed. But this past week I now see myself breaking down. I see a  mom who is weak, complacent, meek and full of irresolution and doubt.

Am I causing my son to hate me? To associate my presence with pain and trauma? I don't want this. I want my son to trust me. To know that I am here to protect him from hurt and harm. To know that I LOVE him with all of my heart, body and soul, unconditionally, just the way he is. So why are we putting Timmy through all of this?

I'm sure that Timmy could care less what society thinks about how he looks or who he is. Timmy is a little boy, who is very happy, with a big bright smile, a funny disposition, a great personality and the BEST son that any parent could ever dream of or want.

As for society, why should we have to try to change our disabled child, to make him look normal so that he fits in? Because society as a whole is cruel. Only in a perfect world would society accept, embrace, educate, and learn from those who are different. Not look down on those who are different with scorn and pity. It is heartbreaking and a shame that a small group of people has to change for the majority just to be accepted in society and be thought of as "normal."

Timmy has an appointment with his occular Plastic Surgeon on Feb. 8th. At this time we will discuss our options and the pros and cons of continuing with trying to get eyes for Timmy.

In the meantime I ask that you please pray for my/our mental and emotional sanity. And that Timmy truly knows that I/we do LOVE him.

Wink, Wink

Timmy went yesterday and had his very first fitting for his left prosthetic eye. We have been talking to Timmy about this very special day for quite a while. I (mom) wanted Timmy to have nice pretty green eyes. But every time I would speak to Timmy about possibly one day getting green eyes, he would protest. So one day I asked him what color of eyes he wanted? I started naming off colors. Brown? No response from Timmy. Green? A definate disapproval by his vocalizing his disagreement. Hazel? No response. Blue? Timmy started laughing hysterically. This his Timmy's way of telling us YES. So blue eyes it is.

You can't tell much about his new blue eye in this picture because the eyelids are still pretty swollen from Friday's surgery and Mr. Boyd from Carolina Eye Prosthetics Placing and Removing the eye to get the perfect fit. Timmy also may need surgery in the future to shorten the muscle in his left eye lig so that his eye can be more open.

This is the very first picture that we have of Timmy with such a broad smile. This picture itself speaks a 1,000 words!!!!!

Isn't he just the cutest here????

Ultrasound Pictures

Here are the ultrasound pictures from my appointment on Jan. 18th. Sorry they are a bit late being posted, but our week has been crazy! This ultrasound was mainly scheduled to determine just how far along I am in my -regnancy. On the day of the ultrasound I was 11.3 weeks pregnant. We had the ultrasound tech (Angela) just to take a quick peek at the brain and eye orbits. It is a bit early for a "definate" diagnoses of a "healthy" baby. BUT she could tell that there were 2 eye orbits. And there were definately 2 seperate brain hemospheres! Both of these are very promising news for us. I have my full anatomy ultrasound on March 1st.

Persistance or Fate

Today Timmy was suppose to have a double surgical procedure. He was suppose to have eye surgery to remove the sutures and glue from his eyelids, which was helping to hold the conformers in place. Being Mr. Timmy's favorite pass time was poking the conformers out. And to replace the conformers with a larger size. The eye surgery went well. We have a surprise post coming early next week.

The second surgery was suppose to be for circumcision. This surgery didn't take place. Fate has FINALLY guided us to a Urologist whio is willing to help Timmy with his best interest at heart.

When Timmy was born, he had a micro-penis and his testicles are undescended. Shortly following his birth, Timmy started having frequent UTI's. At a little over a year of age Timmy's Nephrologist (kidney Doc) placed him on a daily dose of an antibotic to try to help prevent the reoccuring UTI's/ This daily dose worked for a short while. But as Timmy's body adjusted to the antibotic, it stopped doing its job. So we had to switch between 2 different antibotics every couple of months to try to prevent Timmy's body from becoming use to the drugs.

Shortly after Timmy turned 2 years, I was speaking with a mother who has a son, who had some of the same issues that Timmy was having. She suggested that we speak with Timmy's Endocrinologist about a monthly dose of Testerone to help Timmy's "Manhood" grow, which in turn "may" help in preventing the reoccuring UTI's. Timmy's Endocrinologist agreed to the monthly Testerone injections. Timmy received 4 monthly injections of Testerone, which did help his "Manhood" to grow. But the frequesn UTI's didn't go away.

We decided that being Timmy's "Manhood" was now a bit larger, a circumcision might be possible and solve the problem of the UTI's. So we went on a search for a Urologist, who would be willing to descend Timmy's testicles and to circumcise him.

We searched for 3 years with absolutely no success. Each Pediatric Urologist that we spoke with felt that a circumcision wouldn't solve the problem with the frequent UTI's. And even though there is a very slight risk of cancer if Timmy's testicles aren't descended, that the chances are sooo slim that doing the surgery was unnecessary. At the age of 4 years, when Timmy hadn't had a UTI for quite sometime the Urologist felt that it would be safe to take him off of the daily dose of his preventitive antibotic. The Urologist felt that Timmy's UTI's were something that he just needed to outgrow.

Late last summer Timmy started having UTI's once again. One maybe every few months. Nothing as frequent as they once were. In December we approached Timmy's Urologist once again and asked him to PLEASE consider preforming a circumcision. He Finally agreed to do the circumcision, but still felt that descending the testicles was unnecessary.

Persistance or Fate Finally came upon us. Timmy's Urologist was unavailable to preform the circumcision on surgery day, but his associate agreed.

When Sherry Ross came out from surgery and stated that she did not do the circumcision, Tears filled my eyes. I immediately felt like we had been let down once again. This is a procedure that Timmy desperately needs. Dr. Ross went on to explain that she didn't do the circumcision because upon examining Timmy first, she noticed that his testicles needed to be descended. And instead of putting him through surgery twice she felt that it best to wait and do both procedures at the same time. It took everything in my body to hold back my tears. I was so releived that we had finally found a Doctor who was willing to help, who was putting Timmy's health and best interest at heart and who didn't seem to even think twice about Timmy's multiple complex medical conditions. Dr. Ross gave us her business card and asked us to schedule a clinic appointment at our earliest convience so that we all could discuss Timmy's necessary surgery.

We have an appointment to meet with Dr. Ross on Feb. 4th. Hopefully Timmy can get this surgery sometime in early March or April.

Just For Fun

Just for Fun and Giggles I took an at Home Gender Prediction Test this morning. The results are 82% accurate. I came across the website and information on the Gender Prediction Testing a couple of weeks ago while reading things of interest online. I actually had forgotten about the Test Kit, until after my ultrasound yesterday. Floyd and I were discussing Boy/Girl names, clothing, baby bedding etc and this made me somehow remember. The reason I had forgotten about the test was because I'm a thrifty spender and penny pincher. Each Gender test cost $35!
Once I mentioned that there was such a test, Floyd just had to run out and buy a test. His curiosity and excitment of the baby's gender gets the best of him with each of my pregnancies.

The results of the Home Gender Test says that we are having a little girl! I'm not going to put all of my faith in these test results. I prefer to wait until my March 1st ultrasound to have the results confirmed. And then still I rather wait until the baby arrives on my due date of August 6th or the end of July when my C-section will most likely be scheduled.

As a mom the gender of the baby isn't what is important. Having a Happy and Healthy baby takes top priority.

If you are pregnant and would like to take the Home Gender test you can find the info at IntelliGender The test can also be purchased at CVS Pharmacy, WalGreens Pharmacy and Target. Have Fun and let me know what your results are.

Hurry Up And Wait

Ever been to a medical appointment in which the visit should have been a short visit, but turned into hours long? Frustrating to say the least huh?! I call these type of visits "Hurry Up And Wait" appointments. I had one of these such appointments this morning.

I had an appointment with my genetic counselor and perinatologist to discuss my pregnancy and to have a dating ultrasound to determine just how far along I am. This appointment should have lasted 1-1 1/2 hours at the most. But my appointment lasted 3 hours! I arrived at the perinatologist office at 7:45am, 15 minutes before my scheduled appointment time. While waiting to be called back, 6 other women entered the office with appointments scheduled for 8:00am. This should have been a big clue that this was going to be a looong appointment. I guess now that I'm pregnant my brain cells work a bit slower, so I missed the obvious clue.

I was finally called back 20 minutes past my scheduled appointment time. What was even more frustrating was that even though I was the first patient in the office 2 other women who arrived after I was called back first. We met with the genetic counselor, which took all of 30 minutes. There wasn't too much to discuss. I have seen the same genetic counselor and perinatologist with my 3 previous pregnancies. After meeting with the genetic counselor we were seated in a waiting room, where we sat for almost 1 hour awaiting our turn for my ultrasound. After waiting for almost 1 hour, we were finally placed in the ultrasound room. Where we waited yet again for another 30 minutes before the tech came in to do my scan.

I'm 11.3 weeks along. I figured as much. I know my body pretty well and know the exact day that I conceived. Our Poppy Seed measures 2 inches long. S/he is a happy dancer in there! S/he was just a moving around. It is truly amazing just how developed a baby is at 11.3 weeks. The baby has 2 arms and hands, 2 legs and feet and from what we could see of the brain a brain with 2 distinct and seperate hemospheres! At this point to us that is very promising news. Not that having another special needs child like Timmy would be a bad thing. Like any parent, we too want and pray for a happy healthy baby.

After my scan we had to wait yet again for about 30 minutes while the tech entered my scan findings into the computer. We were then placed into another room to do what???? You got it more waiting, to be able to see the DAoc. After speaking with the Doc and going over my blood glucose levels, which I am doing very well on my current dose of insulin. We had to wait yet again for someone to come in to drwa my blood for some testing.

By now you should be able to tell just how much patience I truly have. You guessed it, NONE!!!!

My next ultrasound will be on March 1st, at which time I will have a full anatomic scan of the baby. This week is very crazy with appointments. I'll have Floyd to scan the ultrasound pictures when he gets a chance, so that I can post them later.

P.S. Tippity (My nickname for my neice Tiffany)it is ok for you to talk now, MaaMaa and PaPa know about my pregnancy. Thanks for being Hush Hush and going along with Uncle Floyd's explaination of it being someone else who is pregnant. Yes, he honestly thought you believed him. Luv Ya!

Still Sick....

I've been a bit behind on proof reading my previous posts and getting them posted. SORRY! Things here in the past week has just been sooo CRAZY! And since Timmy gETTING sick on Christmas Eve, I have once again joined the sleep deprived population of parents of special needs kiddos.

Timmy is still sick. As of Saturday he has been requiring 2 liters of oxygen just to keep his oxygen saturations in the low 90's. I tok him to the walk-in at his Pediatricians office yesterday. She sent Timmy over to the hospital to have a chest X-ray. Thamk Goodness Timmy doesn't have pneumonia. His illness is viral. I was so scared that we were looking at a possible bout of aspiration pneumonia from his episode of spitting up on Thursday evening.

The Doc has increased his antibotic dose to twice a day and started him on Albuterol and Pulmocort nebulizer treatments.

As of today, I was able to get Timmy weaned down to needing only 1 liter of oxygen. He has also been laughing and enjoying sucking his thumb. So he is on the mends. I hope that the remainer of this illness passes fast, so that we can get down to enjoying our vacation from Daddy and Emily before time runs out.

A Visit From Mr. Scrooge

I spoke with Santa earlier this week about coming to visit us a day early, being that Floyd and Emily are leaving early tomorrow morning, Friday (Christmas Day), to go to IL to visit with Grandma and family. Everyone had a great Christmas. The kids got almost everything that they asked Santa for.

Except for Poor Timmy he got more than he asked for. Mr. Scrooge stopped by and left Timmy with a yucky upper respiratory infection. We took Timmy to the Pediatrician this morning when he woke up with a temperature of 102.8! He prescribed Omnicef once a day for 10 days. At this point, Timmy's lungs sound clear, so hopefully this is just viral.

Poor thing he has been spitting up and has had a temperature as high as 105.1! Yeah I agree, YIKES!!! Luckily we were able to aviod a visit to the ER. We gave him several COLD baths, which of course "TimmyLocks" absolutely hated! And we rotated the doses of Tylenol and Motrin every 3 hours. So far he isn't requiring any oxygen, so this in itself is a good sign. I'm not a Doc, but I strongly suspect that he has caught what Emily had only 6 days earlier.

The worst part about this whole thing is when we had his script filled at our local Ma and Pa pharmacy the powder that was used to mix the medication expired 1/09! I have been using this pharmacy for over 18 years and have NEVER seen anything like this happen before. I would expect something like this from one of the mass marketing pharmacies, but not this pharmacy. Their reputation in our area is too good. I honestly want to believe that this was an oversight, but the expiration date is printed clearly on the bottle. So how could it have been??? So now that all of the pharmacies are closed for Christmas and no one is open tomorrow, Timmy will have to wait til Saturday to get any medications to help fight this yucky illness. I just hate that we didn't notice this error sooner. One lesson learned, when getting ANY medication filled, ALWAYS check the expiration date of the medication BEFORE leaving the pharmacy...

This is Timmy's 1st illness since his trach being removed. Hopefully this won't be too bad. Please, if you believe in prayer, Pray for no hospitalization!

Visit with Doc

I had my OB interview today with a nurse and a visit with an OB (Dr. Chalk) to go over my blood glucose levels. I have gained 1lb already. Yikes! I'm about 7.6 weeks along. I have a pregnancy dating ultrasound scheduled for Jan. 18th. With the Holidays and Floyd being out of town this was the earliest that I could get in. Without the ultrasound the OB estimates that my due date is Aug. 4th. According to my calculations going by when I ovulated, I say my due date is closer to Aug 12th. The Doc kept my insulin dose the same, 20u of Humilin N along with 10u of Humilin R in the morning and 7u of each N&R in the evening. We also discussed the 1st trimester blood testing. I agreed to the tests, only because IF something should be wrong it will give us and the Docs even more info to work with to help p0lan in the treatment and care of the baby. My next OB visit is scheduled for Jan 28th. At this time a full pelvic exam will be preformed. Yuck!

A Day Filled With Doc Visits

Today was a busy day filled with Doc visits for me and Timmy. I had a visit with my Cornea Specialists. Everything looks great. The Doc took me off of all of my glaucoma eye meds, steroid eye meds and 1 of my opthalmic antibotic eye medications. I now only have to take Vancomycin, which is an opthalmic maintance antibotic. I'm at a high risk for infection of the eye due to my Keratoprosthesis (artificial cornea and lens). I have a follow up appointment in January to check my eye pressure. If the eye pressure is high the Doc may have to reconsider putting me back on 1 of my glaucoma medications.

Timmy had an upper GI study with barium to check on his suspected reflux, due to a possible failure of his Nissen Fundoplacation. Over the past several months. we have seen Timmy spit up, he is able to burp, his ENT noticed some esophagus irriataion during one of Timmy's bronch surgeries and following meals Timmy tends to shove his fingers/hands soo far down his throat, as if he is trying to releive pain due to possible reflux. What do you think the study showed??? Absolutely Nothing Wrong! The radiologist even had Timmy swallow some of the barium while lying flat on his back. And still NOTHING! The Nissen is perfectly intact! The only explaination that the radiologist and GI Doc could give us is that If the pressure builds up to much in Timmy's stomach, it is possible for him to be able to burp and spit up. So now we sit and wait til Timmy's GI appointment in Feb. to see if there are other test that can be done to possibly get to the bottom of Timmy's GI problems. Because we aren't buying the explaination given us. Something is wrong somewhere, but where???

Timmy also had a urology visit. We discussed with the Urologist about having Timmy circumcised. When Timmy was alot younger he use to have reoccuring UTI's. He was put on a maintance antibotic to try to help prevent the reoccuring UTI's. At around age 2 Timmy's Endocrinologist gave him 4 months of testerone to help with his micro-"Winkie" (Just keeping things clean for any very young readers. Don't want any parents to start freaking out.). Timmy's "Winkie" is still small, but not as small as it once was. We felt that the reoccuring UTI's was due to Timmy's small "Winkie," but of course the Urologist wouldn't agree. Timmy has had 3-4 UTI's in 2009. So we are starting to see an unwanted pattern. We feel that being Timmy's foreskin is soo tight that we just aren't able to completely clean underneath it. Even though we do the best that we can and it appears to be clean. Of course the Urologist disagrees that the foreskin isn't too tight. Anyway by the end of the visit the Urologist agreed to try to schedule the circumcision in Jan. during Timmy's scheduled eye surgery. If this time isn't possible we will have to schedule a different surgery. Thank goodness this eye surgery isn't suppose to be so invasive and stressful. I can't imagine having both ends operated on at once!