Jude's story

I have received an overwhelming response from Emily's news brief yesterday, and that's wonderful. One man even sent a donation of $500, which will help so many children. In addition to donations, and interest in helping her, I have received several questions regarding Jude's condition. I have started directing people to the blog. I then realized my blog is lengthy, and rather difficult to navigate sometimes. Many people have heard Jude's story, but I thought I would write it again for those that have never heard it before. So this is the condensed version.

When I married Mike I knew he wanted a baby. He and his first wife had suffered through five miscarriages, and it had been very difficult. She had a disease that prevented a viable pregnancy, rather they were ectopic. Mike's parents are in their seventies, and he had expressed to me that they really wanted to see his child before they passed away. So he was elated when I came to him, and told him we were expecting. It seemed the pregnancy was plagued with problems from the beginning. At first they couldn't find the baby via a sonogram, and the doctor worried the pregnancy was ectopic. Mike immediately began to panic because of what he had been through before, but luckily a little baby was seen only two weeks later (what seems a very long 2 weeks later). From there things were pretty much normal. We dreamt of the baby we would have, we guessed the sex, and we watched the baby grow. My OB has sonograms in every room, so with every visit we got a sneak peek. We went through our nucuel test, and everything looked perfect. The OB even said she thought we might be having a girl. So let me point out that the multiple in office sonograms showed everything was perfect with the preganancy! Since I was 35 my OB was precautionary, and requested I see the perinatologist next door for a level 2 sonogram. So my husband and I made our appointment, and went in all excited to finally find out for sure the gender, and that everything was fine.

When I settled myself into the table I stared at the large screen on the wall where the baby would be displayed. We watched the doctor go over every inch of our baby telling us everything looked perfect. He asked us if we knew the sex, and we said "no, but the OB thinks its a girl". He then made several off color remarks about the fact this baby was very much a BOY! In the next instant the doctor turned from joking to very quiet, and my motherly instinct knew something was wrong. "What is it?" I asked. "Your baby's brain ventricles are on the upper end of the normal range". "Well what does that mean?" I asked. " It means it's normal" he said. I am sure he was trying to calm my fears, but it sounded more like a father putting an end to a conversation. Then he said that just in case he wanted to get an amnio, and send us to UT Southwestern medical center for an in utero MRI. "That doesn't sound that normal" I said, and he just looked at me. I submitted to the amnio. I had had one with Emily.........(which was a very normal pregnancy), so I was prepared for what it would be like. I then knew there would be a week long wait or more before we heard if there was a genetic disorder. It wasn't the longest week EVER! During the wait they set up the appointment for the in utero MRI. Who knew you could MRI a baby before the baby had even been born.

I soon received a phone call that the amnio showed everything was normal, this brought much relief. So then we had to tackle the MRI. I hate closed spaces, I panic in elevators so much that I would climb several stories of stairs to avoid them, so you can only imagine me stuck inside something as enclosed as a coffin is. Mike was able to stand in the room with me, and he held my hand while they scanned the baby. Once it was over they came to escort us out, and I glanced inside the room where they were viewing the images. I saw the doctor resting on her hand on the table, covering her mouth, staring at the images in front of her, and I knew it wasn't good. After about fifteen minutes the doctor came to get us, and she escorted us to her office. When she pulled out a box of kleenex I knew it wasn't good news. She initially told us that we needed to keep in mind the "fetus" was only 19 weeks, and it was difficult to image a brain so young. Then she cleared her throat and told us "with that being said I have only seen one other case like your sons, and it wasn't a good result". I think it was the first time I had heard our baby called "our son". She talked in very technical terms, but my brain seemed to grasp everything, and before I knew it there were tears running down my face. I looked down, and when I looked up she had tears running down hers. "I am sorry" she said. "There are people that come in here that shouldn't be parents, but when I get a couple that truly wants a baby it breaks my heart to deliver news like this". So what had she said? She had taken out a sheet of paper, and drawn a brain. On either side of the brain she had colored in two black spots, and then said "it appears there has been a hypoxic ischemic event, these dark spots appear to be blood". It was months later that I finally realized her fancy words meant "stroke". She then said this had caused massive damage to the brain, and her prediction was the baby would have serious issues. She then said she would send the information over to our perinatologist.

Before we went back to the perinatologists office we visited a neurosurgeon with Cook's children hospital. He was phenomenal. He said that a baby's brain is like elastic, and even though the brain cannot heal permanent damage, it can reroute itself. He also said the brain is the most misunderstood organ in the body. He said the baby could have no issues, or issues ranging from dyslexia to severe. He then went on to tell us how many babies suffer strokes in utero up to 1 out of every 4000. Some people won't even know their child had a stroke because the brain heals itself, and they may just present with ADD, or some other issue later in life. After we left his office we felt a bit better, only to fall down again when we went back to the perinatologist for the follow up from the MRI. I can only imagine how the doctor felt coming into our room. He half smiled, and said he assumed we knew what they found on the MRI, and we acknowledged we did. His next words will always stay with me. He said "this is where we decide if you want to continue the pregnancy. If you do then you move forward, and you never look back wondering what if, and if you don't the same rule applies". We sighed. We knew we would keep "Jude", but we asked anyway. "What if we decided not to continue". He said " then you would have to go to the abortion clinic in Dallas because the hospital will not recognize the need for an abortion regarding a pregnancy that may be alright". WOW, I thought. Flashes of making my way through to a clinic with people picketing outside rang through my head. Then the doctor spoke "there are some people that have a type a personality and cannot handle a child with special needs. In fact, more often than not if a child is born to those parents and they are informed something has gone wrong...they will leave them behind". I was shocked! Really? Could people do this? So Mike, and I looked at the doctor and informed him that we cannot abort a baby that might or might not have issues, he was our son, and we were continuing on. He accepted our answer, and said they would scan Jude's head every two weeks looking for growth and development. If the baby did not grown we knew there were severe issues, and he might not make it.

The rest of the pregnancy was plagued with major issues. It's almost like my body was trying to terminate. It's was almost like nature was trying to take over. I had kidney issues, a serious blood and platelet problem, and early labor starting at 31 weeks. I was in and out of the hospital, wound up with an IV in my leg at home, and constant monitoring that would communicate via a phone line to a nurse on call. During this time Jude's head circumference...........grew..........every week. The doctors were baffled, and began to call Jude "a true miracle". Once we got to 38 weeks they requested we update them on his progress because he would give hope to other babies. Then it was time to deliver. After 12 hours of labor with Mike, and my cousin at my side I gave birth to Jude. It was of course, not uneventful! The epidural only took on one side, my platelets plummeted, and Jude suffered shoulder distosia. I remember the doctor saying "Oh hell no, this baby is NOT going to have shoulder distosia after everything he has been through". She commanded that my cousin (a mid wife), and the nurse crawl on top of me and push my stomach down as hard as they could. Mike was panicking, and I was pushing as hard as I could, and then we heard a cry, and I looked immediately at Jude's head. "It's small I thought" but not to small. Jude looked squished, but so beautiful, and he let out mighty cries.

The next day the pediatrician came in to tell us Jude checked out in the nursery 100% healthy, and we felt so relieved. Then the next day we found out that there were some issues on the head sonogram, but that he still seemed to be normal. He had perfect reflexes, was eating normal, reacted normal, and was deemed 100% normal with a 9.9 on the Apgar! We were more than thrilled at this news, we had our baby boy, and we thought he had overcome the odds!!!

We spent three glorious months assuming Jude was fine. He rolled over, was holding his head up, smiled, and seemed like the perfect baby. Emily had a beautiful brother, and she had become the perfect sister. I spent a lot of time playing with Jude, we planned Emily's 10th birthday party, I started a college fund through a whole life policy for Jude thinking he was healthy, and we moved on with our lives. We moved on... until one night when Jude was 3 months old. Mike had gone to a friends house. I was home with the kids, and suddenly Jude began to open his mouth over, and over, and I noticed his eyes fluttering a bit. Being a second time mom.......I knew........this was NOT normal. Mike walked through the door, and I said "I think the baby is having a seizure", and Mike fell down in front of Jude crying, it broke my heart. We took Jude by my cousins who looked at him opening and closing his mouth. She said it was different, but maybe just a baby thing. I still didn't feel comfortable, so we took him up to Cook's, where and I wrote down on the sign in sheet "possible seizure?". Suddenly I had a nurse rushing out to see Jude, and he looked into Jude's eyes. He then took us to the back immediately, and told the doctor something about Jude "focusing on the left", and possible Grand Mal seizure. WHAT?

We waited patiently to hear the results from the MRI thinking they would probably show something. They showed a lot. It no longer showed the blood from the stroke, but it showed massive damage. The doctor that came in just ran through the motions, and said Jude would never be more than a baby, he would never walk, he would never talk, and he probably wouldn't make it past five. We expected to hear news, but not that news. We were devastated. I was angry! I left the hospital staring at women with normal children, or who were pregnant envious of their happiness. I left that hospital, and left my normal life behind.

Once we went through our steps of grieving we gathered ourselves, and pulled ourselves up . We found a new neurologist who did not put an expiration label on Jude. We sought out therapy, a nurse, and all the help we could obtain. We battled insurance companies, and the state to make sure Jude had the best he could get. We spent countless hours in and our of hospitals. He battled a round of pneumonia (which is what will normally kill a child in Jude's condition), and we learned of countless other mothers in my same circumstance. I met amazing people with amazing children that had special needs, and then I learned to never look through someone that is different again. I learned to asked questions, to educate myself, and to put down my pride and accept help when it was offered. I learned that many times I had to console others when they thought they were consoling me. It was a different way of life, but one that seemed to offer more than what I thought it would. During one of Jude's many hospital stays where we smelled the horrible smell of EEG glue, Emily stepped forward. She was lonely, and bored, and also needed to find a purpose to work through what was happening. Emily came up with the idea to help others, and we started Emily's Smile Boxes. Suddenly little Jude had inspired my amazing daughter to do something heroic, Jude had at such a small age, had a legacy.

We know that Jude's condition is never truly stable, and can change at an instant. He has such a severe form of epilepsy that it has it's own label, but labels don't matter much to us so I won't post it. He is also legally blind, and has cerebral palsy. His immune system is very vulnerable, and he receives several medications several times a day. In December of 2009 Jude suffered a horrible bout of the rotavirus, and CDIF. After Jude recovered we had a doctor tell us he was amazed Jude made it through, but he is our little fighter. We are so blessed, and so thankful for Jude. We have met amazing people through Jude's illness. I encourage you to click on the links to the right to read about Kendall, Max, and Rheagan Leigh, and their heroic mothers. Jocalyn has been invaluable to me with information, and education. SO our road has been difficult, but laced with so many blessings. I believe someones story is always worse, and we should be thankful for what we have been given. We pray for as many days as we can get with Jude. The first neurologist may have been harsh but at near the age of two Jude is still about a 3 month old, but we love his darling smiles.

I feel like Jude follows the slogan like the Army's. He has done more by the age of 2 than most of us will do in our lifetime!

A little update

We are having a quiet day at home today, and it is lovely. I am still not out of my pajama's, and just relaxing on the couch with Mike, and Jude. Emily is spending the night with her dad tonight, and he will then bring her to the Smile Boxes making party tomorrow.

Jude seems to be doing very well today. The increased Felbatol is decreasing the seizures, and the spasms. They are not gone completely, but their intensity have decreased greatly. Anything that will decrease his seizures is wonderful. We now have to test his blood in the next few weeks to make sure the Felbatol is within the right limits. Oh, and since we have started the iron supplements we have noticed that Jude's coloring is getting a bit better.

Tomorrow is Emily's Smile Box making party in Grapevine at the Grapevine Convention Center from 1-4. Yesterday NBC channel 5 ran an incredible piece on Emily and her upcoming party. I have not been able to find the video online, but here is the article http://www.nbcdfw.com/news/local-beat/Delivering-Smiles-One-Box-at-a-Time-100136099.html. I was very impressed with Emily, because she completed this interview on her own. I had to work so she was responsible for handling everything that day. Mike was there with her, but she did everything on her own. I was also very impressed with the reporter. She really spent time making sure the report was done in the best possible manner. We also found out she had to work really hard to overcome Dyslexia, and through determination made it as a reporter.

I just finished watching Marley and Me again so I am off to wash all the tears off my face. Sigh!

The Circus trip was amazing. Barnum and Bailey really went above, and beyond to make Emily feel amazingly special. Mike, and Jude were not able to go because Mike was still not feeling well. Honestly, it was for the best because the whole event was long, and very loud. Since they didn't go we took Emily's cousin Faith with us, and I think she had a really good time. Once we got to the American Airlines center they instructed us to go through the employee entrance to meet our coordinator. Emily, and Faith then began commenting on how they could tell people they worked for the Circus once.

Once we were inside they greeted the three Barnum award winners, and their family. To read more about the award you can go to this link: http://thebarnumaward.com/. They don't have the DFW winners up yet, but they should soon. After the initial greeting they took us for a special back stage tour of the workings, and operations of the circus. We learned some very interesting facts, and it was fascinating seeing everything up close. We learned that there are 300 people that travel with the circus including staff, entertainers, and families. They still travel by train, and everyone pretty much lives on the train. They also took us for an up close personal look at the animals, and I was glad they did this. Due to negative press in the pass I was very interested in asking questions regarding the treatment of the elephants. They didn't have to take us back there, and they didn't have to answer my questions, but they did. The gentlemen that performed the tour was very honest with me. I told him I have friends that boycott the circus because of the elephants. He said, "and I understand that. This isn't the place for these animals they should be free. We have 23 elephants that have been bred into captivity, and we treat them like we would want to be treated" He went on to tell me how they retire their elephants earlier, and they have an elephant resort in Florida. How they have also set up an Asian Elephant conservatory, and more to try to save the great elephant that are going extinct. The animals had large nice set ups on the bottom floor of the facility. They also had "outside" time, and "pool" time. I could also tell their trainers just adored them. I know it's still not the place for them, but it did make me feel a little better seeing how sweet the elephant and her trainer were to each other (and this is when they didn't think I was looking). Faith, and Emily both got to feed "Asia" the elephant, and she loved the bread.

After we met the animals including a feisty mini horse named ramsack, we went on to the big ring. We were let into the main stage of the circus to meet, and mingle with the clowns before the public appeared. The clowns dressed the girls in funny outfits, did little tricks with them, and took lots of pictures. After that they let the public in, and we were swept off to interview with channel 11 for a news story that will run Friday morning. Emily also talked to KRLD and should be featured tomorrow morning on 1080 am. Once the circus started they whisked the winners Harry, Emily, and Grace to the side entrance to prepare for their awards ceremony. One by one they called the kids out, and in front of thousands of people they were recognized for their generous community work. Grace the bronze winner was born very premature and with spina bifida, she and her family have worked to raise over $150,000 for March of Dimes. The Gold winner was Harry, and I hope I remember his story correctly (it was very loud). He shared his Bar Mitzvah with a holocaust survivor that never had one, and inspired others to do the same. None of these children were looking for recognition, but you could tell their stories inspire others to donate to their communities, and that's what Emily has always wanted.

Barnum and Bailey, and Feld Entertainment were also nice enough to send home a little stuffed baby elephant for Jude. Emily snuck into his room when we got home, and slipped the little elephant under his arm. I think he will like it. I believe the girls named the elephant "zemzi".

It was an experience of a lifetime, and their contribution will help with the 400 Christmas boxes Emily wants to pass out. Thank you Barnum and Bailey.

Very shakey video, but you can hear the ringmaster talking about Em.

The man, the circus, and the blood

I am being whiney again so bear with me in the next paragraph, and then I will move on.

Let's talk about the man. I feel like the man controls my everyday life. I work for the man that demands a lot of my time, but I enjoy my job so it all works out. I enjoy the fact that I can comfort those who expect to see a "man" in my position, and I am able to rectify their situation to their highest expectations without a mans help. I love the fact they say they will always call and consult with me for any future issues regarding any situation my expertise can satisfy.
Yesterday I had one little man crying in his bed, while one big man was extremely sick in the bathroom. Said boss man expected me to be at work, because our other employee was out. I understand it's not my agency, but I cannot afford to lose my job. So to make said boss man happy, said husband man would be unhappy, and little man would be left wanting more. I could not call in sick, and I had to go off to work, there was no choice yesterday. I felt guilty all the way around. I would feel guilty letting my boss man down if I called in, but I still felt guilty leaving my sick man, and my little man. So I went to work, and literally worked my tail OFF yesterday. I was exhausted. Once I got home the sick man handed me little man, and I checked into another shift. The man has me down I tell you!

So the doctor called back yesterday, and I guess one of Jude's labs had not come in on Friday when they initially called me. Therefore, they have retracted there statement that there was nothing wrong, and are now saying that Jude is indeed borderline anemic. His panel has now dropped from 9 to an 8, so it was even lower than the initial test that sent us into the frenzy. Since his liver functions are showing perfect, they are assuming he just needs a supplement. Therefore I have to stop, and pick up an over the counter medication for him. I am sure this is just an issue with needing an supplement, although it did make me wonder. I had such terrible blood problems when I was pregnant with Jude, that I still wonder if any of it attributed to his stroke. One issue I had was anemia. We have not finished the 2nd, and 3rd panel of Jude's "stroke" work up to see if there was an underlying cause. He had gotten sick, and wound up in the hospital before we finished. The first round of blood work came back perfect, so we need to finish the second rounds. I believe we will do this the next time they test his felbatol levels.

Once I got home yesterday Jude was all smiles, and giggles for me until about 10:30. Poor guy started teething again, and he was NOT happy. He also had about a thirty minute or more seizure yesterday. We just increased his Felbatol level so this could be an adjustment to the medication. We have seen the small seizures drop, and they turned into one long seizure during the day. It's strange how medication can affect your body. Jude has also rubbed his little chin raw again on his blanket. He wants to be on his tummy all the time, and will literally scream until we put him down. I am coating his chin with a medication to help. We are trying to keep him on his back, but he just wants no part of it.

Tonight Emily has the Barnum hero award at the circus, and she is so excited. She is going to get to bring her cousin since Jude will be sitting on our lap. I am unsure how Jude will do with the loud noises, but if it becomes to much I will excuse myself. Emily actually gets to participate in a part of the circus, so I know she will have a great time. We also have her Emily's Smile Boxes making party on Sunday, and we are really excited about that.

The lake

Jude was suppose to have an appointment with his GI specialist this morning to review the lab work. The doctor called early, and said he reviewed all the blood work, and it's perfect. He said they are going to chalk this incident up to a HUGE scare caused by a lab error. Nice! I am just grateful Jude is alright. He told us to watch for blood in his stool, but other than that we are free to think Jude is just fine.

Jude learned a bit of peek a boo this weekend. He cannot hold his head up for long so while holding his his head will rest into my should covering his eyes. When he would lift it I would say "Peek a boo Jude", and he would smile. This caused him to try to lift his head several times until he just got to tired to hold it up anymore.


Saturday we spent the day at my aunt's lake house with my friend Fleck. We had a great time just relaxing, and enjoying each others company. I keep telling my aunt I am going to move in there one day, and we will all just have to co-habitat. I love being by the water, well minus the snakes. My aunt was so gracious because she took us all to dinner at Go Go Gumbo, which is amazing. There is an old house next to my aunts house that I will show you below, and I am waiting for the people who own it to sell it, so I can win the lottery, and buy it. Big dream huh? I just love the house. The highlight of the day was watching Emily, and Fleck ride off on my aunts father in laws motorized scooter. I was cracking up.

Saturday after we got home from the lake Jude went to sleep fairly well. He then decided to wake up at three because his teeth were hurting. He was up, and down until about five thirty, and I decided to give him a bottle. Jude then went into a terrible seizure that lasted on, and off about twenty minutes (remember Jude has cluster seizures). After that he spent another thirty minutes cracking up. I would run my fingers through his hair, and he would laugh, and laugh.

I have also noticed that Jude enjoys being at home. When we take him out of his environment he is starting to get a little disturbed. I told Mike, he is turning into him. All Mike wants to do is be left alone in his "man cave" upstairs.

Soul searching..........

I am SO happy Jude's lab results were okay, I am truly relieved!! For the first time I didn't have that "motherly instinct," so I wasn't sure what to expect from the call we eventually received from the doctor. I was relieved when the doctor called, at a little after two ....which was sooner than expected. He said that Jude's CBC, and liver panel were both normal. He said there is an issue with Jude's iron, but this is something we can take care of through supplements, or through other measures. I am thankful that we are not in a hospital tonight talking about resolutions to a possible terminal situation. It's strange to me that with Jude our conversations are regarding easy solutions, or situations with no resolution. Our family is in all considerations "Lucky", and I pray for all the mothers that are not in the same situation I am tonight.

Sometimes life wears me out............between work, and Jude's issues...I sometimes want to throw my hands up, and say "THAT'S IT!!!" . Although, I don't. Yesterday my husband called me at work, in a panic regarding Jude's iron levels. I calmly said "We don't know anything yet, so there is no need to panic" I then took over calling doctors, and more, so he could have time to ....... have a melt down. Regardless of my reassuring words my hubby ....... gave up for a few hours. He said that he felt like regardless of the work we put into Jude, Jude will eventually pass away, so why continue to work with Jude, or with Life. My husband didn't eat lunch, and he didn't eat dinner. He crawled into bed, and did not reemerge until the next day. Before you pass judgement, please understand our past two years have been trying. Anyway, he went to bed, but he woke up with a new attitude. Mike has a tendency to call me "Snow White" because I try to find the hope in every situation. To me life was bestowed upon us because God believes we have the strength to prove our life is worthwhile, and to show that to others. If we have the strength to show that we can rebound from tough situations, then maybe that will show others they can too, and thus it trickles down to others. It's the old pay it forward take on life. Mike said he believes no one will ever know what he went though with Jude, but I believe that someone will. In my words "Everyone has their own story, and someone Else's is ALWAYS worse, so be grateful for what you have". I believe that this blog has touched many people, and so has Jude. So despite what issues Jude has, his little life has brought hope to someone out there, that had no hope.

So I must admit that I did finally freak out a bit....... and well I think my tiny freak out made a point. I told my hubby "sometimes I want to be depressed! I want to not go to work, I want to sleep all day, but I can't because I am always taking care of you, or going somewhere with a schedule." He looked at me and said "We cannot always be someone for everyone else all the time" Mike may freak out every now, and then, but he has such educational phrases. What a truly confusing, but true statement.

One of the first songs I ever sent to Mike while we were dating is listed below. I have shared it on my blog before, and it still rings true. http://www.youtube.com/watch?v=o8pQLtHTPaI&feature=avmsc2

Blood results

We just got Jude's blood results back, and everything looks perfect! Now he sees the doctor on Monday. His iron is not "binding" correct, but right now they aren't that concerned about it. They can handle that Monday. Thanks for the prayers, THEY WORKED!!!

Blood test

So this morning I put a call into Jude's pediatrician. We still have not changed doctors yet because I have been unable to find someone that will accept the medicaid. Anyway, I told him the whole story. I explained I wasn't in panic mode yet, and that this could simply be a lab error.

He was very nice, and said he would help me even tho I changed doctors. I advised him I haven't changed doctors, and then he mentioned I requested records. I advised him that's because I was fighting for the nurse, and we won her. Anyway, he said we had reason to be concerned, and he would draw orders for a full lab ticket. He said he wanted a CBC, liver enzymes, and iron tests. He said the iron deficiency test would advise us if this was food related, or something else. If it's "something else" then we have to start figuring out "what". He advised he would request the tests "Stat" but he couldn't promise they would be back today.

Basically the test Jude had yesterday was this:

This test checks your hemoglobin and hematocrit levels. Hemoglobin is an iron-rich protein in red blood cells that carries oxygen to the body. Hematocrit is a measure of how much space red blood cells take up in your blood. A low level of hemoglobin or hematocrit is a sign of anemia.

We know he has anemia, so we just have to figure out why. Hopefully this is food related. Felbatol was our last option in seizure medications, according to the dr. I guess the others aren't as strong, and just won't treat the type of seizures he has.

So we are not so patiently waiting to hear back. I will keep everyone posted.

wait and see, and mass confusion

When something traumatic happens in your life you slowly realize your world will never be the definition of normal again. Just when we think we may be approaching a level of normalcy, life slaps us in the face. I know many of my friends with children in Jude's situation feel the same way. I think there is some veil on life that makes us feel like we cannot just let go and scream. We keep a facade about us that everything is going to be alright. Occasionally I just want to flip the heck out, and tonight is one of those nights.

Everything has been going well lately. Jude is moving more, he is happy, and he is trying to communicate. Emily is finding her place in life, and Mike's photography is finally taking off. His photography is his wish in life, and my salvation from working so hard. Yet today a possible silent masked monster has us yet again lying in wait. It seems, like any issue presented in regards to Jude, it is a "wait and see" type of problem. Jude went in today to get his new monthly prescription of Boost, and Pedisaure. This means a mandatory iron level test, and Jude's was very low... anemic low. It had dropped pretty substantially since his last test. The nutrionalist seemed very concerned, but assured Mike that she trusted our circle of doctors, and insisted we call them.

When Mike called me I immediately thought of the medication we chose to put Jude on "Felbatol". We knew the risks the medication had, but due to Jude's severe seizure issue we chose to move forward with the medication. We knew that Jude's seizures could eventually be fatal, and we knew the risk of the medication was worth it. I knew one of the main side effects of Felbatol was liver damage, or aplastic anemia, yet we moved forward to try and save him from the seizures.

I decided I wasn't going to panic when Mike called me, and I simply started calling doctors. The Pediatricians office was worried, and suggested a blood test. The neurologist didn't seem concerned at all, and simply said it was an iron deficiency due to food. I immediately felt relief when the neurologist said this, and I relayed I trusted the doctor. Once I hung up the phone I become worried again, because Jude's diet is only Pediasure, and Boost.......both rich with iron. Mike then put a call into Jude's GI Specialist who works hand in hand with the neurologist. His comment was that he was "reasonably concerned" and he ordered the blood test for tomorrow. He doesn't believe it's his diet, and said "I don't think this will be a cause for alarm during the weekend, but bring him in first thing Monday."

We aren't stupid! We know what we are facing. We hope this is simply a test error, or that somehow, and it is a long shot, but it is a dietary problem. The doctor made clear if this is a liver problem that is causing an absorption problem, the results will be devastating. I choose to believe the power of prayer will prevail, and this is just a test problem. This test was done via a finger prick, and I think that will reveal problems. There is no telling the amount of plasma that came out with the blood thus creating issues with the test. I just hate being worked into a frenzy for no reason, but I would prefer being in a frenzy vs a real problem.

Jude looks well, and is acting well. I am hoping this isn't a hidden problem, like the doctor said it could be. Bleh, I hate being on a wait and see schedule.

Booking Jude's birthday

I went to book Jude's second birthday party today. I decided to hold it at the Gymboree Play and Music that Jude loved as a baby. I talked with the teachers there, and told them Jude's situation. They are going to customize his party to fit his needs and to cater to the younger, and older children who will attend. I am happy we found a place to have his party, for some reason I was a bit hesitant booking it this year. While I was there the two year old class was playing. I don't feel sorry for Jude, or us regarding his situation, but I still mourn for the child trapped within Jude's stroke. Sometimes I think I am the only mom left around that still has little pity parties. It's strange, but they just happen, and are very fleeting. By the time I get home, and I see Jude smiling at me I am once again thankful for who Jude is. I am looking forward to celebrating another year of Jude's life.

Occasionally I get emails from people regarding educating myself on seizures, and other issues. This morning I received one on children suddenly dying from epilepsy. I know it sounds terrible, but the article is educational. This seems to apply more to children that move in their sleep vs Jude who doesn't. http://www.nytimes.com/2010/07/27/health/27epil.html?_r=1&ref=health

Summer is winding down, and Emily is beginning to think about going to middle school. We have a clarinet to buy for band, school clothes to purchase, and lunches to buy. It's a lot to do, but we will have it all wrapped up soon. I know Mike will miss having Emily around during the day. She has been a big help lately. We started a chore jar, and every time she completes a chore she puts a bead in her jar. When it is filled up to the top she gets $50 cash (it's a big jar). Mike is also doing well, and is getting more involved in his photography. You can become his fan on facebook here: http://www.facebook.com/#!/pages/Fort-Worth-TX/Mike-ortiz-Photography/130589006974629?ref=ts&__a=6&ajaxpipe=1

Jude had a horrible day yesterday, his teeth were really bothering him. Mike was without the nurse, and was at his wits end. At one point he just put Jude in his crib to cry because he couldn't take anymore. I kept telling him I really thought it was Jude's teeth, but it's hard to tell. So when I got home I lathered him in ore jel, and then snuck some motrin in his bottle. Within thirty minutes Jude was a happy camper again, and snuggled into my arms. Finally I got to take a good look into his mouth, and that huge molar has finally broken through. Although, now it seems two more and trying to pop up. I will really be glad when the teething is over. On Tuesday the nurse said Jude had a 7 minute seizure, and I am sure it's from the teething. I am so glad she is there to assist him when the seizures strike.

Teething sucks

Jude is still having a terrible time teething. He was up and down last night from three am on. We have tried most everything for his teeth. The phenobarbital made Judes gum hard. It seems a tooth will pop through, and then it will sink back into his gums again. The other day I picked Jude up, and blood went pouring down my arm from Jude's mouth.

I am hoping this situation resolves soon. I also feel terrible because Jude doesn't know how to communicate with us that he is in pain except to grunt, and whine. Hopefully someday he will be able to tell us he is hurting, and what he needs.

Pageants, soccer moms, and neck control

This was Jude once he got home from the hotel this weekend, he was SO happy to be at home on his blankie. He squealed for a really long time, I think he truly recognized that he was back home. So I had really been looking forward to going to the pageant we went to this weekend with Emily. Number 1, because she was so excited, and number 2 because it was a break away. Being away at a hotel seems to give me the right to say "I am busy", and I need to do that every now and then. It's a way to shut off from everything. Fortunately, the pageant went amazing, and I will get to that, but the hotel stay was horrid. Let's go down a list of issues right quick.

1. I had requested a wheelchair accessible room in my reservation. When we got there they had us in a regular room, but luckily they remedied that situation quickly. So I figured everything would be alright, I was wrong.

2. At two AM Jude threw up all over Mike's bed, so we called down to get new sheets sent up. It took forty minutes, and they only sent one blanket, no sheets. So I took the comforter off the bed Emily, and I were in to lay down for Mike.

3. The next night my Salmon was very undercooked at the resteraunt, I felt like I was eating sushi.

4. Jude was in my arms, and I was heading to my room when he started to have a seizure. The maid was in my room so the door was open, thank goodness. So I went to enter my doorway to set Jude down on the bed, and the Maid SHOO'D me out, and shut the door on me. She told me I had to get the key out of my pocket, and open the door. I understand this is for security purposes, but you really think someone is going to break into a room while their child is seizing in their arms.

5. Upon check out we had requested a bell hop to help us with our luggage since we had Jude. We were informed "there are not bell hops working on Sunday", which was very strange. Mike even indicated to her Jude's situation, but she still said no one was there. I PASSED a bell hop on my way down stairs, and at that point I was fuming mad. I felt like they discriminate against special needs.

I put a call into their corporate office today. The hotel also had several teams of girls that were in a soccer tournament staying this past weekend. Many of them were so nice, and came up to tell Emily how pretty she looked. Several moms inquired how they could put their daughters in a pageant, and several daughters begged their moms to put them in. Then there were the few who had to pass judgement simply because the word "pageant" was involved. One mom walked up to Emily and said "So do you REALLY like doing this". Emily looked at her like she was insane and said "Well yes, I really LOVE doing this". The mom replied "Well my daughter says she cannot even think of wearing a dress or make up" I laughed and said "Emily likes doing this I am just along for the ride because she loves it, oh and by the way she plays pitcher, and short stop in softball" The mom looked a bit stunned and said "Oh, well she is........ multi talented I guess". "Yes she is, a tom boy and a beauty queen" I said.

It's unfortunate but there are people that give pageants a bad name, but there are several good systems out there. Emily's goal is to eventually go into the Miss America system when she is a teenager. They have great scholarship programs for teens for college, and focus more on talent. Emily has learned poise, speech, and more from competing in pageants, and if I would let her do more she would. Although, it's time consuming, and can be costly so she is limited to a few. I guess you find the negative in every sport. Yes, they use make up but Emily does the natural side so it's just for stage lighting just like cheerleaders use. Anyway, I sat back and wondered what that mother would have said if she was witnessing a full on glitz pageant with fake everything everywhere, she probably would have passed out.

So the pageant itself was wonderful, and Emily had a great time. She won overall natural photo, overall best smile, and the 9 and up mini supreme. She was also in the top 15, and she won interview, photo, and most beautiful in her age group. Here is Emily in her "fashion wear". She was suppose to wear something you would see in a magazine.





I thought she looked precious, and what a great job her friend Dane did on her hair! Anyway, when we first got to the pageant we surveyed our room, and I laughed at the baby bed they gave us. It seems Jude did not fit.





So Jude wound up sleeping with Emily, and I for a bit until he woke up continuously, and then he moved in the Mike. That's when said throw up accident happened. Jude's teeth were hurting so Mike was trying to sneak some Motrin into his bottle. Jude was grinding his teeth so hard he would make his gums bleed. Jude hates Motrin so he thought he would disguise the taste with formula. The taste was NOT disguised because Jude threw a fit until he threw up everywhere!





While we were waiting on events, Jude worked on his head control. He was there to cheer on sissy tho when she went down to compete. He is getting so much better at holding up his heads, and moving around. I am so proud of him!!





When I snapped the below picture, I said "Emily I think you should go on stage like this" she cracked up! To me she is so beautiful no matter what!!



So I am happy to say that Emily's Smile Boxes sent out 50 official Emily's Smile Box build a bears to a children's hospital in San Diego, one in Chicago, and one in Arkansas. I am so proud.......Emily is branching nationwide. Her goal of reaching every children's hospital in the nation is becoming more attainable.

Jude, and Em

Jude did wonderful last night holding his head up. When I picked him up, and rested him on my hip he would keep his head up for about 4 seconds before it fell. He would do this over, and over again, and I told him I was very proud of him. The more Jude learns about keeping his head up, and being on the move the better his outlook for life expectancy is. Children that do not move tend to get pneumonia a lot. We already had one issue with pneumonia, and we hope we can avoid that in the future.


Yesterday Emily found out that she won the Barnum award silver level with Ringling Brothers. On July 28th she will get to be their guest at their opening show in Dallas. She will be given $750 for Emily's Smile Boxes, and a medal. She will also get to stay to watch the circus. She was so excited when I called to tell her about the award, but after squealing with excitement, she stopped and said "Wait does Jude get to come too?". She is always so concerned about Jude, and it really touched my heart. They just adore each other. Here is a picture of when Jude saw Emily when she got back from a week at her dads house.

I was going to add another image showing you that Jude looks like Edward Cullen again, but it seems Blogger is having some issues. Have a wonderful weekend everyone!

trying to crawl

So as promised here is a video of Jude trying to crawl. I am afraid it isn't the best video that we have of the accomplishment, but it's the only one I have at work today. The nurse was so impressed when she saw him yesterday, that she took an amazing video. I cannot wait to share it with everyone. Now this video may not look like much, but it really is! Jude is learning to push his legs under him. Normally Jude just lays on his tummy, and makes no effort to move. By the end of this tummy time Jude had made it to the end of his mat. This is baby steps, and eventually I have full faith he will be able to get around pretty well.

BIG NEWS

So I have amazing news! Yesterday Mike called to tell me that Jude had ............ready for it? (insert drum roll), TRIED TO CRAWL! Can you believe it? Not only had he tried, he had succeeded in moving. He said he watched Jude lift up his booty, and starting figuring everything out. I was so anxious to get home last night!!! There was a part of me that wondered if Mike wasn't just wishful thinking, but I could tell from his voice something was going on. In addition Jude's therapist had seen the accomplishment, and was thrilled. She said it was "asymmetrical crawling".

So when I got home I immediately went to put Jude on his tummy to see what would happen. Sure enough Jude lifted up his booty, and put his legs in a w, then put one forward, then the other, and working his arms as well. He only scooted maybe half an inch, but he still did it, and he smiled! He understands what he is doing is a great thing, he truly gets it.

Not only is Jude trying to crawl he is continuing to look at us in the eyes, even his therapist pointed this out yesterday. He also is EATING more, and initiating taking bites of baby food. Jude is very delayed, but he is doing his best to try to learn more, and I am very proud of him!!!

It makes me wonder what he could accomplish if we could get a full grasp on his seizures.

I will post a video of the crawling tomorrow.

A wedding, and a girls night

It was a very busy weekend this past weekend. Friday night we went to my friends wedding that was as Shrek says "Far far away". We had a great time, and Mike took all the photo's at the function. He normally refuses to shoot weddings because they are so time consuming, but he shot hers for her. I got to see my friend Sarah I used to work with, and I realized that I miss her very much! We spent a good part of the night just sitting, and catching up with each other. I think I was a bit depressed after she left. I love Jenn in my office and she fits in perfect, but I will still sad to lose my daily buddy of ten years. Jude had stayed with my aunt because I assist Mike with his photo shoots. That was a great thing because it was an outdoor function, and it was very hot! Jude seemed to have a great time with his Aunt Docia.

Saturday I had a "July Scentsy Scents" party. Scentsy brought back 20 scents that used to be their most popular for the month of July ONLY. So I had a bunch of girlfriends that came over to smell them, and place orders. We then spent a few hours sipping wine, and laughing a lot. It was some MUCH needed girl time. I know I have been in an on again off again funk, but I am pulling myself out of it. I got some new clothes, got my hair done, and I am making an effort to get back into the world. This weekend Emily has a pageant in Dallas that she has so been looking forward to. She has practiced every night, and even helped me sell Scentsy to raise funds for this. It will be great for us because it's a weekend away. I think I am going to turn off my phone, and just relax with Em, and the family. She got a very pretty bright blue dress, and we are just flipping her hair out in pretty curls. Today she is at the Kids Swing golf tournament in McKinney raising funds for Scottish Rite. They are doing a news story on this event tonight at 9pm on Channel 33.

Jude has done very well this weekend. He was running a low grade fever on Saturday, but I believe that is from his teeth. The poor kid is now cutting 3 teeth at the same time. Jude did very well this weekend looking at people directly in their eyes, and lifting his head up. I was also very impressed with him this morning. I walked over to his baby bed, and without saying a word he looked up at me and smiled really big. He knew I was there, which means he has vision has to be improving. Jude had many seizures this weekend, and bless his heart he gets so scared during them. I am attributing those to his teeth as well. I believe that Jude's progress can sing the praises of our nurse. It seems like when she is around him on a steady basis he begins improving.

Enough said.

"You are the thing that used to be normal, but that was so long ago, you can't even remember what it was like" ~ Jodi Picoult

A quick update

Jude seems to be doing fairly well this week. He has had a lot of seizures, and several that are very sad to watch, but overall he seems healthy. I have noticed that Jude is really turning towards us more when we talk to him, and he is getting pretty good at eye contact. He even tries to look back at me if I am talking while holding him.

The nurse has already made a tremendous difference with him, and he seems so much happier than he was. Mike is great with Jude, but I think they had both reached their maximum tolerance level. I have noticed that Jude is also getting more independent, and will complain because he wants to be put down. Once you put him on his mat he will play with his toy, or stare at it for awhile. The nurse has had him in his stander several times this week, and that has started a new interest in Judes feet. Today he looked like he was reaching for them, but he got tired quickly.

Jude has also eaten some baby food this week, and seems to be doing well on the addition of the Boost. I am still hunting a pediatrician that accepts Medicaid. If anyone knows of one I would greatly appreciate hearing about them.

An epiphany

Well thank you to everyone who commented on my most embarrassing situation below. I now know how many of you read my blog on a daily basis but fail to comment........I appreciate facebook for shedding light to this situation, lol. I find humor in everything, and I have no problem sharing my most embarrassing moments. Life gives us plenty of chances to laugh, so why not take them? Goodness knows we also get plenty of chances to cry. It's better to find the positive, isn't it?

During my past year or so of blogging about the possibility and the reality of having a special needs child, I have heard and read the same sentence over and over. The sentence from other posters and bloggers normally consists of the words, "I hate the word normal". I have done a lot of thinking about this sentence, and I have come to this conclusion. We only hated the word "normal" once our child was deemed "abnormal". It's true, it hurts, it sucks, and it teaches us lessons. Before our children were bestowed upon them the label special needs, and a life long need of personal care, many of us failed to ever truly see those who were........abnormal. We hate the word normal because it pin points the one word society will never label our children. They may receive many amazing labels like "special", "inspiring", "improved", and others, but they will never receive the mark we want them to receive. It's a hard cold thing to admit, but I have learned that when you do admit that your child will never be society's version of "normal" you find amazing satisfaction. I have always been taught that if you don't do the best you can, then you will be a failure. So it's a question of what your interpretation of success is. Mine today is the fact my baby boy turned a complete circle on his blankie. He did his best, and that to me represents the coveted title of "normal"

It's amazing what YOUR new definition of normal can be once you break through the plexi glass society puts upon us.

a good laugh

Since my blogs seem to be rather depressing at times I thought I would share a humiliating, but funny story. So today on lunch I went to the mall because my clothes are getting SO old and SO ratty. It seems I wear and wash the exact same things every single week. I have a tendency to buy for the kids, or go out before I buy myself clothes. I wanted to get some new black pants for the office, but I could not find any on sale so I opted for some other items. I shop the sale racks to save money, and luckily I had found a few good bargains.

A few hours into being back from lunch I wandered into the bathroom to take care of business. Well when I looked down I noticed some light shining through my pants, which caught me off guard. "SURELY not" I thought to myself, so I looked again. Low and behold my pants were split straight down the seam of my crotch up the back. Yes that means you could see my undies. "How long had they been that way??" I thought to myself as scenes from my office, customers, and the mall raced through my mind. I pictured people cracking up as they left my office. Then I paused............and thought "Well if my boss has seen my thong, that's it, I am just staying in this bathroom for the rest of the day." Luckily I had bought some capri's at lunch so I slithered to my office with my shirt pulled down as far as it could go, and snuck to back to the bathroom to put them on.

On my way back, I passed my bosses office who inquired about what I was doing. I meekly said "Pants fiasco", and I took off back to my little spot in the business world. I decided right then and there I need new clothes, and somehow I was getting them!


Ps ~ wipe your tears away from laughing, and have sympathy people...lol

Video's and updates

Here are a few video's and photo's from this weekend. I am very proud of the first one, it shows Jude reacting to his toy, and reaching for the button to make the music play. He doesn't cooperate after the first time, but I was still very happy with him accomplishment.




The second video shows Emily sneaking up on Jude while he is sleep eating. He caught her which I think is hilarious. It proves to me that Jude really has more vision than we think. I think his vision is limited to his left eye, but he is "looking" more.



Jude still has his bruises, but they are healing which is great. He has also had some nasty diapers, but other than that he seems well. We are still keeping a close watch on him.

Weekend with Jude.

It's been a busy weekend with Scentsy, and spending time with Jude. Jude has a few new bruises, but I am still hoping they are just from being on his tummy, restraining during fits, or something else other than his medication. Jude has also had some serious seizures this weekend, but the good news is that he has been in a good mood. He is really trying hard to keep his head up too. For the first ever I saw him hold his head up, and turn it to the right.

I took Jude to a Scentsy party this weekend, and I had placed him on a mat on the floor. It was my friends house, and I knew they would want to see him. While I was helping with orders I heard my friends daughter say "Oh how cute he is throwing his hands up and giggling". I turned around, and said "Oh no that means he is seizing!". Poor things, they teared up because they thought he was playing, and I felt so terrible. I reassured them, "This is okay, he will be okay, the laughing seizures are easier to hear than the crying seizures". Hopefully it made them feel a little better. This is a daily routine to us, and I forget others are not used to it all.

I wish Judes nurse was coming tomorrow so she could check him over, but she will be back on Tuesday. I am going to give him a bath tonight, and check for any other bruising.

Mike is a busy bee with his photography this weekend, and I ma very happy for him.

bruising and the doctor

When I got home last night I noticed Jude had a pretty significant bruise on his forearm. I then noticed there was one on his knee, and a small one behind his arm. Jude never bruises so this was a bit concerning. One of the things we watch for with his Felbatol is signs of easy bruising. I put a call into the neurologists office today to see if they think it warrants a blood test, or if we should just watch him. I am waiting on a call back.

So I heard from the pediatrician today regarding the medicaid. Guess who is the one doctor out of all of them including the specialists that won't work with us? Yep, that seals the deal, it's time for a new pediatrician.

Jude

The GI specialist said Jude has gained 1.5 pounds. That is AWESOME considering that he was throwing up so much. He said the main goal is to get more calories in Jude, as he will be growing a lot more. We have to keep up with the amount of calories he needs compared to his size. Also we have to consider that he needs more calories because the seizures are equivalent to a heavy work out at the gym. The doctor also gave us a prescription for Boost, and we are to add 1 Boost a day.

In addition he also agreed to take the Medicaid with a small co pay. We are just thrilled.

Short update, it's been a busy busy day. Thanks for your continued prayers for Jude.

Update

Good news! I took it upon myself to start calling Jude's doctors and advising them of the insurance situation. My primary concern was the neurologist as we see him the most. I truly love Jude's neurologist, and did not want to switch. Luckily I received an email this morning, that they would indeed take the medicaid. Although they said there would be a $50 charge, so I think they may just be scaling back their fees for him. Either way it's awesome and I am thrilled.
I also put a call into Jude's pediatrician's office. The doctor was out, but the billing specialist was so nice. She said that they too would "most likely" be able to accommodate us.

Jude had several crying seizures yesterday which I just hate. The neuro tells us that crying is an involuntary reaction, and Jude isn't aware of what is going on. I just don't think that is accurate. You can tell that Jude is so scared, and looks at you like he is wondering what is happening to his body. I am beginning to feel that since they are "cluster" seizures Jude is able to retain some cognitive ability, and understand there is something happening that is wrong.

So Mike took Jude last night from 9:30 - 1:30 so I could sleep, and sleep I did......soundly! He then brought Jude in and put him in his baby bed, and he slept until about 9am this morning. I woke up about 4 because it is just an automatic reaction for some reason. Luckily I soon fell back to sleep.

Today Jude sees the GI specialist to check his weight, feeding, and to continue the evaluation on if a G Button is necessary.

well $@#% !

It seems like when we get one situation handled, another doozie creeps up. Does anyone else feel this way? It seems that due to the economy my employer is going to have to switch health insurance. We are going to individual plans. The good news is that he will continue to pay my insurance. The bad news is that Jude doesn't qualify for the personal plan, and therefore has to go through the state pool. It's basically like having a a damaged house that needs insurance, and when it's turned down by everyone you have to put the house through the state. Well that plan isn't cheap, and since it's a private plan the state will no longer reimburse me for his insurance. I have been so incredibly stressed out today that I have literally made myself sick. Not to mention I have been up since 4am with Jude.

We have kept Jude's primary insurance in force because the HIPPA program was allowing us to by reimbursing us. Also Jude's neurologist, pediatrician, and GI specialist all DO NOT take medicaid. So the only option we have is to let his insurance run out, and fall on the medicaid. I am distraught! We will have to pay out of pocket for the neurologist, and replace the other doctors with ones that do accept medicaid.

I understand my boss had to do this, he didn't have a choice, it just stinks. I am so stressed! Not sure why life cannot just level out.

The good news is, Jude seems to be well, and Em comes home tomorrow.

Hooray for a mini vacay

I haven't really done anything on my mini vacation, and it's been wonderful. My make up pretty much sat in it's bag in the same place I left it on Friday. I wore old clothes, and I rarely fixed my hair........ahhhhhhhhh, it was nice! Mike, and I watched lots of movies, and I spent lots of time with Jude. Em was with her dad at the weekend, so I didn't have my precious darling saying "MOMMMMMM I am bored!". I love her dearly, and I miss her, but she called to tell me she was having a great time knee boarding on the lake. I am sure she is having a blast.

Mike has spent the better part of the weekend working. He had lots of photo's to edit from recent shoots, so I was with Jude all day. I loved it! In fact Jude got up at 2:30am this morning, and rather than being exasperated I could finally wrap my rested mind around the situation. I brought Jude into bed with us, and I hoped he would fall back to sleep. Finally about 3:30 I realized.......Jude was just up! I took him into the living room, and we laughed together for awhile. He kept saying "Ha ma", which I thought was rather fitting. I ended up fixing Jude a 6 ounces bottle with a bit of melatonin to see if he would eat. Since he ate well all day I wasn't sure if he would eat again, but to my surprise he sucked the entire six ounces down. I then sat and talked to Jude just to see him grin, and look at me. I love how he finally will focus on me. Granted it's only with his "good eye", but he still looks at me, and it means a lot. About five am I took Jude back to bed, and he fell fast asleep a little before 6. We all slept soundly until about ten am, but I will still a bit tired today.

We were suppose to have a shoot for a little girl we know tonight, but Mike was having a problem with his color converter. He talks photography shop to me a lot, but I just nod my head and agree, because he loses me. I understand posing, being creative, and coming up with photo ideas. However, I have no idea what the aperture, pro shop, and 50ml vs 100.5 lenses means. I admire how much he knows about light, exposure, and more. Who knew that photography required such an education. So due to the color issue we had to cancel the shoot, but Mike only wants to offer his clients his best product, and I admire that. He wanted to see some prints prior to proceeding. Therefore, I spent the better part of the day playing Martha Stewart :). I made homemade pickles with the cucumbers in my garden which took a few hours. I then made low fat creamed corn on the grill, corn fritters with tomato and basil on the grill, steak, and grilled veggies. I even took a picture via cell phone, and sent it to my aunt. She proclaimed I have been very industrious today. She also wanted to know if the nurse had been here, but I happily informed her, "Nope, Jude has just been amazing".

I enjoy being home with my family........it makes me happy!!

A mini update

It's been a very nice day. I haven't made it out of my pajamas except to take a bath, and put them back on. Jude has been up since 6:15am despite my efforts to convince him it was my mini vacay, and that all mommy really wanted to do was sleep in. However, I didn't mind getting up with him, and to my surprise he has been a wonderful eater today. He has talked to me a lot, and snuggled up close.

He has had a few serious seizures, and lots of spasms, but he is just Jude and that's what happens. Mike mentioned today how he was touched by a little boy that was Jude's age who he shot pictures of. He told me how the boy was asking about the dogs outside, and walking around the house. I told him that doesn't get to me as much anymore, because Jude is so special for who he is. We have started thinking about Jude's second birthday, and what we will be doing in celebration. We don't ever expect gifts, but it's always inevitable that with Jude's condition people will ask what the best thing if to get him. I started looking online at weighted blankets, speech therapy toys, and more, but I always get overwhelmed at all the choices. I really wanted to get him a speech toy where he can press the buttons to answer questions. Although, when we mentioned this to his therapist she politely told us that Jude just doesn't have those fine motor skills yet. It's disappointing, but I have faith he will get there.

I am watching Sex In The City the movie for probably the fourteen millionth time. I loved the show, and even loved the movie more. I have girlfriends that are awesome, and when I watch this movie I always think of them. I think it's true that we have friends that fit ever character in this movie, and then some. I could go down the list but they know who they are. I will mention that my friend Ginger fits Charlotte to a T when she grabs Carrie, and tells Big "NO" after he breaks her heart. Ginger is such a sweet girl, but when you cross the line she is a tiger who defends her friends, and family. I am a lucky girl to have so many great friends, and family members which is evident by all the support we have received.

Doctors

Let me start this blog by saying I don't hate on all doctors, just some. We have an amazing neurologist, a fabulous GI specialist, and a great pediatric eye doctor. The one area I feel we are lacking in is Jude's pediatrician. He is a good doctor, but he is quick to say "nothing is wrong" when indeed it is. I guess I could say he is a good doctor, but not a good special needs doctor. I feel like when a special needs mother calls, or comes in, to tell you something is wrong, they not only mean it, they know! Best example I can give is when I came into the office saying I thought Jude had fluid in his lungs, and they sent me away saying nothing was wrong. Two days later Jude was admitted into Dallas Medical City with pneumonia n the left side. I am all for avoided antibiotics if you can, but not everything is "viral".

I also don't think he fully comprehends Jude's situation, and how much we put into his daily care. As mentioned before it seems the pediatrician is the one that signed off on Jude only having personal care services vs a nurse, when the neurologist completely disagreed. Therefore, I decided to start searching for another pediatrician that would give us full attention. I put a call into Emily's old doctor who is in Bedford. I left a message on Monday, and when I didn't hear back I called again Tuesday. When I didn't hear back, I called again Wednesday. I was then informed that the office manager had to talk to me before I could talk to the pediatrician. The first thought into my head was, "when did this doctor get so big for his britches that his phone calls had to be screened in detail?". I should have gone with my initial impression. So the office manager asked me what my concern was. I explained that I was looking for a doctor that would give Jude his full attention when Jude needed it, and would listen to us. That if I ever called frantic on a weekend, to know I am not a nervous mother, but a well educated mother. She then asked who our current pediatrician was. After talking with her, I again waited, and waited for a return call. I put a phone call back into her today, and she told me she had called my office, and was informed I was out......such a lie! There are two of us in the office, and are both meticulous about passing out messages. She then proceeded to tell me he just wanted us to come in, but wanted me to know he wouldn't do anything medically unethical. Excuse my french, but what the hell is this man talking about? When did I ever mention anything being done that was unethical? Only thing I could reason is that he called our current pediatrician who informed him of the nursing incident. I was at a loss.

I was however not at a loss enough to tell her exactly what I thought. I told her that it was very disappointing to me because I had so much confidence in said doctor, and I now felt very let down. That even after moving I continued to send him referrals, but that would now stop. That I was amazed that he couldn't take ten minutes out of his day to call me to see if Jude would even be a case he wanted to take on. That to rest assured I saved myself a co-pay because this was obviously NOT a good fit. If it took 5 days to get an answer like that, I cannot imagine what would happen if Jude was truly ill.

Insensitive doctors drive me insane. I know they are busy, but your clients should be a priority. I have now located a pediatrician that was recommended by another special needs mom, and she is by our house. Mike wants to stay with our current doctor so that's a consideration too. Maybe we can just voice our concerns to him. Mike said you don't give the mailman a an envelope to deliver without an address, and I guess he in right. In other words don't put the big decisions like medications, and nurse arrangements in the hands of the pediatrician.

Trying so hard

A while back I wrote a review of the amazing episode "If" on Desperate Housewives. They tackled the subject of having a special needs child, in an amazing manner. At that time I wanted to post a link, or embed the video from this episode, but I was unable to find it on you tube. I just decided to look again, and it is now listed. It's a bit lengthy, but if you haven't seen it, it's worth watching. After I had written my piece on the show, I heard from the writer of that episode. She explained to me that she too has a special needs child, so the piece was written from her heart. I think you can really tell, because any special needs mom will tell you she has sat on the washing machine, and bawled her eyes out. There are two links to the video's.

http://www.youtube.com/watch?v=et6N-xoasdY&feature=related

http://www.youtube.com/watch?v=LJis5bRAWAk&feature=related

One of the reasons I started searching for this video again, was because of our experience with Jude last night. Jude was on his tummy again, and he is working so hard to actually move. Mike helped push Jude's arms in the correct position, and suddenly Jude's head popped up. It was obvious that Jude knew what he was doing because he kept trying to look back at me. Mike then helped Jude scoot a few spots, and Jude seemed very happy. Mike looked at me and said "That proves to me there is a little boy in there trying to get out". It's so true. Jude is trying very hard. Today Jude went and was fitted with the orthotics for his legs. Next week he will go visit his GI specialist who will again evaluate the possible G tube situation.

Mike was editing photo's that he did for some friends of ours last night. Gena lives about two minutes from us, and has a daughter, and her son Frankie that is special needs. We have labeled Gena our "Diaper fairy", because she leaves packs of diapers for Jude all the time. It has been a tremendous help. In return for all her help Mike gave her kids a free photo shoot. Normally he charges $150 for a full shoot, so we hoped it might repay her for all her kindness. I have also really been nagging at Mike about how I want us to shoot special needs children in addition to his other shoots. He agrees this is something we will do, and I am just thrilled!!! Sometimes we parents of special needs feel so limited as to where we can take our kids from daycare, to the movies, to a photographer that has actually patients. Gena told us the last time they tried to have photo's done the lady told her to bring Frankie back after a nap, people are so ignorant sometimes. So here is the image Mike caught of her son, and I just love it!