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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Monday, December 28, 2009

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.

Thursday, December 24, 2009

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!

Wednesday, December 23, 2009

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!

Monday, December 21, 2009

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!

Saturday, December 19, 2009

Poor Emily

Do you ever feel as though there aren't enough hours in a day? That is how we felt yesterday. Floyd stayed up until 2am making DVD's of the Holiday Preformance for Timmy's classmates and his teachers. I was just going to send the DVD's to school with Timmy being that we already had sooo much to get done. But Floyd felt that it would be nicer if we delivered them to the class personally. I was nice to be able to see the joy in the faces of the children and the teachers. One of Timmy's classmates, Laura enjoyed the DVD so much that she watched it over and over while we were there.

After leaving Timmy's school we stopped back by our house to have a quick bite of lunch before heading back out to Emily's school for her classes Holiday Party. Just as we were about to leave, I get a call from Emily's teacher asking that we come to get Emily from school because she was "really" sick! Poor thing! verytime it seems that there is something special going on at Emily's school we have something else that HAS to be taken care of or she gets sick. So no pictures or videos of her Holiday Class Party. :0(

Floyd goes to get Emily from school and takes her to see the Doc. My little girl isn't really little anymore. She weighs 50lbs! Yes at the tender age of 4, she is the size of an average 6 year old! Emily is very tall. She has definately inherited her daddy's genes. The nurse at the Doc office didn't get a heigh but I would be willing to wager a good guess that she is very close to 4 feet tall. She has a mild case of walking pneumonia. The Doc prescribed Amoxicilin for 10 days. It seems to be helping. She woke up this morning FULL of energy and with a good appetite.

With all of this going on, my sister needed help decorating the outside of her house so that it would look nice for my neice's Christmas party. Household chores that have been neglected for a few days that need to be completed. Kids to keep entertained so that they don't kill each other or get themselves into trouble. Preparations for Timmy's Nurses Appreciation Party on Sunday. Whew, I'm exhausted again just from typing this! :0)

ONLY 5 more days and Floyd and Emily will be on their way to visit grandma for a little over 2 weeks! The week of Dec. 21-27 Zachary, my 13 year old ADHD trouble maker (I say that with love.) will be spending time with his dad! I'm really looking forward to just mine and Timmy's time alone. With lots of cuddling and napping. Aaaahhhhh, if only I could fast forward time......

Friday, December 18, 2009

Holiday Preformance

Below is a video of Timmy's Class Holiday Preformance. It is a bit long, sorry. Mrs. Bishop, Timmy's teacher reads the poem from the book before all of the children preform their individual parts, which is basically a repeat of her description. To see the children preform just fast forward the video. Just remember to first mute the music on the site before starting the video. Just scroll down to the bottom to mute the music.

This is Mrs. Bishop's first year having her students put on a preformance of any kind. She is the ONLY teacher in our or the surrounding school systems to go to such extreme in using adapted technology with communication switches to help her students to be able to communicate and to preform this very touching Christmas program.

Even though some things had to be changed at the very last moment, due to a major power outage, which was caused by a traffic accident that caused power outages for most of our town. This being the first time Mrs. Bishop had tried anything like this with her students. They ALL did a GREAT job!


Tuesday, December 15, 2009

6 Weeks 2 Days

I had my OB visit today. I just LOVE the scales at the Docs. They truly showed me some mercy today. They have me weighing 142lbs.

I'm actually further along than I thought. The Doc I saw did a quick ultrasound just to try to get a more accurate due date and check for viability of the pregnancy. Our little Poppy Seed measured 6 weeks 2 days. And had a heart rate of 130bpm. According to myths, a low fetal heart rate is a predictor of a baby boy. Honestly, I don't care what the sex of the baby is. All I want is a Healthy baby.  But Emily on the other hand wants a baby sister. How do I know this when currently only those who read this blog know I'm pregnant. Because for the past 2 months Emily has been going around telling EVERYONE that she is pregnant and going to have a baby sister. Kids sure say the darnest things. Can you imagine the looks we get when she tells strangers this while we are at the park or store? We've tried to explain to her that if she has a baby it won't be her sister but her little girl and that mommy and daddy would be Grandma and Grandpa. She disagrees by saying that we can't be MiMi and PaPa cause she already has one.  I'll wager my guess at the baby's sex after a couple more OB visits when I can see if there is a steady trend to the heart rate.

Why is it when a mom is pregnant and she wants to do right during her pregnancy and it goes against the Docs beliefs, they look at you like you have grown 2 extra heads??? The initial reason for scheduling this appointment so quickly was to discuss other medication options for my diabetes. I was taking Metformin, which is an oral medication that is used to help the pancreas to produce more insulin. According to my extensive research, like ALL other oral diabetic medications, they have not been adaquately studied in women who are pregnant. I also obtained the knowledge and opinion of 2 Endocrinologists, whose opinions I truly trust and admire. Both Endocrinologist agreed that ALL oral diabetic medications are definately a NO, NO during pregnancy.

When I told the Doc I would rather try to continue to control my blood glucose levels with diet and exercise before being put on ANY oral diabetic medication. The Doc excused himself from the room to go get the Chief of Obstretics to talk to me. The Chief has been at this clinic for 27 years. My oldest daughter is 24 and was delivered by Docs from this clinic. The Chief walks in scratching his bald head and says to me "The info you have about oral diabetic medications is incorrect. They are safe." I pulled out my Handy Dandy up-to-date Medications Guide and pointed out that ALL of the info in this book says that oral diabetic medications SHOULD NOT be taken during pregnancy. Both Docs mouths dropped to the floor. I told them that I prefer not to be used as a "test patient" I want PURE insulin. All the Chief could muster up to respond was "Ok, if you really want to stick yourself multiple times a day." I responded with "I'll do anything for the well being of my unborn baby!" Sooo, I was given a script for Humilin R, 10u in the AM / 7u in the PM and Humilin N, 20u in the AM / 7u in the PM.

I have an appointment on Dec. 23rd with the OB so that they can review my blood glucose levels and adjust my insulin dose if necessary.

Only 10 more days left BEFORE Floyd and Emily leave to go to visit Grandma in Chicago for Christmas. Timmy and I are looking forward to some much needed mommy and son time alone! The plan as of now, Grandma will be coming back with Floyd and Emily, so that she can spend some time with Timmy. We feel that the winter weather is just too brutal for Timmy. We sure don't want him to get sick if we can prevent it.

Sunday, December 13, 2009

Do You Know What This Means?????



I have been contemplating whether I should share this news now, wait until after the Holidays or until I'm further along in my pregnancy. I asked myself, why not go ahead and share this WONDERFUL news? By sharing the news now, all of our family and friends who will have insensitive and rude comments can get their opinions out in the open BEFORE the Holidays. This way we will be able to put the remarks behind us and go on to have a Love filled Holiday together. Also by going ahead

Being I'm...ummm lets just say I'm of advanced maternal age, this WILL be our last baby.

I honestly didn't believe that I was pregnant. Not this month anyway. It was our Christmas shopping trip to Wal-Mart and Floyd's persistance that made me start thinking differently and decide to test. Our local Wal-Mart has a Subway Sandwich Shop inside. I don't know what they were cooking up on Tuesday morning, but one whif sent me running to find the nearest bathroom! After gathering our few items, we couldn't get through check-out fast enough, before I had to go running again from the smell coming from Subway.

Boy what a pleasant surprise I received early Tuesday morning! Before the 5 seconds were up while preforming the test, 2 bright red lines appeared. I was so in shock, I had to take the test to 3 different rooms and use 3 different types of lighting to convince myself what I was seeing was true. When I showed the test to Floyd his first remark was, "I told you you were pregnant."

From my calculations I'm 4 weeks pregnant from the date of conception and 7 weeks from the first day of my last menstrual cycle.

I went to my PCP (Primary Care Physician) and he confirmed that I am indeed pregnant. My first set of HCG numbers was 26,793.

My pregnancy symptoms are frequent urination, nausea (especially at night), DEFINATELY smell aversions, persistant hunger and tiredness. All in all though I feel pretty good.

I have an appointment tomorrow with my OB to discuss medication options to help control my diabetes during this pregnancy. I also have my initial OB appointment scheduled for Dec. 23rd, where they obtain family history information, calculate a due date, will review my blood glucose levels and discuss blood tests that are necessary during early pregnancy. Hopefully they will also schedule me an ultrasound to check the viability and to get a more accurate gestational age of this pregnancy.

If you pray, please pray for a Happy and Healthy baby for us. And that our family and friends will see our side of reasoning of why we felt that yet another baby would help make our family complete.

Wednesday, December 9, 2009

Deck The Halls




















My Husband has a thing for decorating for Christmas, Can you tell? There are 44,000 lights here. This doesn't include the 5,000 lights that were used to decorate Timmy's wheelchair ramp, which can't be seen in this picture. Thank goodness my parents live next door or there would be alot of complaints from our neighbors about all of the bright lights disturbing them. All of this wouldn't have been possible without the help from my dad, who is an electrician. It took 4 outlets pushed to their max to supply the electricity to run these lights. Thanks Dad!!!

Tuesday, December 1, 2009

Patrick Henry Hughes - A Talented Young Man

This in one Talented and Amazing Young Man!

Patrick Henry Hughes also has a book "I AM Potential." This book can be purchased Here.

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