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.