Monday, August 31, 2009

Loads of updates

I am sorry I have not updated. I took the weekend off to relax, and to gather my thoughts. Friday night Jude, and I went and hung out with my friend Michelle, and her boyfriend Greg. We enjoyed the conversation, and some great Tex-mex. Jude did pretty well, but he did have a moment where he decided to show them his bottom lip. Saturday we dropped Jude with my dad, and we went to enjoy a couples massage that our friends Natalie, and Andrew bought it. They knew our lives have been very stressful lately, and therefore they got us a treat. The massage was great, but I felt like I couldn't fully unwind. The funniest part of our couples treat was Mike when the massage was over. He fought me on going to have this done, and at the end he sat up with his hair going everywhere and said "wow, that was great!". So to say the least he relaxed, and enjoyed the day. We then grabbed, a bite to eat, and went to pick up Jude. I am afraid that Jude had woken up VERY upset, and was pulling his refusal to breathe tantrum. My dad looked very frazzled, and I felt sorry for him. We appreciated the few hours to ourselves though, and are very thankful to all that helped out.

Sunday we picked up another donation for Emily's Smile Boxes, and then we picked up Emily from her daddy. Once at home we all relaxed and watched the movie "Ink Heart". We got a few laughs because any time Emily has seen a movie she gets very irate if you talk, she wants to make sure you don't miss out. In this case she had seen Ink Heart, and said he loved it, so she got very angry with Mike for talking. We were both cracking up at her, and she put on a front that she was angry, and then cracked herself up too. During the movie Emily, and I both noticed Jude was rather warm, I attributed this to him being held, but it wasn't the first time I had noticed it this weekend. He has also been considerably cranky again, and choking on his saliva. I have noticed that he still sounds a bit rattled, and this means he will be taking another trip to the doctor's office. Mike is taking him today at about four thirty to have the doctor listen to his chest again. I understand what they will do if Jude is aspirating on food, but what about the choking on his saliva? Dry up some of his saliva I guess. Jude's seizures are also still present, so I am leaning towards going back to the liquid form of Depakote.

After my insurance tyred on Friday we received a notification this weekend that the secondary insurance has pre approved Jude's adaptive stroller. This is wonderful news, but it also irritates me that the primary insurance hasn't stepped up for anything. This is a great indication of why the country is in constant financial crisis. Texas has a fabulous program set up for medically dependent children that is not based on a parents income, but rather the child's income. In other words if they have serious special needs you get help to keep the parents from going into financial ruin. Granted it takes awhile to get on it, and during that time we accumulated thousands in medical bills, but since the time we have been on it, things have been much better. So they immediately approved the stroller/wheelchair, and we are just waiting to hear on the other items. Another wonderful thing I have to share is that I emailed the wonderful people who make the wingbo swing to inquire about insurance covering their product. The kindness in people sometimes amazes me, because the lady at the company emailed me back the nicest letter. She told me that since jude could benefit from their swing they would send one out right away, and then deal with the insurance....really??? wow!! I was so amazed because customer service like that is rare. If you have not seen the wingbo please click here...

Overall it was a great weekend, but I do have one personal issue. I feel like a seventy year old woman with my back. I had mentioned my car wreck on my other blog, but I will update you here. My friends can bypass this paragraph because goodness knows you have heard it before. In 2001 Emily, and I were on our way home from work, and daycare. I made a last minute decision to return a movie to blockbuster, and turned the opposite direction of the way I normally travel home. Suddenly, I looked up and noticed a small 280 z following me very closely. Right when I uttered the words, "Why is this guy on my a$$?" the lady in front of my slammed on her brakes. I slammed on my brakes, and braced for impact, and everything went in slow motion. It seemed it took longer than expected for him to hit me, but I guess he had braked and was skidding. He hit the back right corner of my Explorer at an estimated speed of 50mph. The angle he hit my suv caused Emily and I to turn a 180, and hit the curb violently. We struck the curb with such force that we began flipping. Luckily a light pole broke our turn or we would have hit a gas station. I remember being upside down, watching feet run our direction, and hearing people screaming. It took me a minute to figure out what was going on, to wipe the glass out of my face, and to scream for Emily who was in the back. Luckily everyone was ok, pretty shaken up but over all alright. I had a dislocated jaw, road rash across my hands and fingers, large hematoma on my right leg, bruised kidney, etc etc, but the big thing was my back. The impact of the crash curved my spine, and there is no longer any cushion in my last 3 vertebrae. I have always been in pain, but now it's to the point of agony. I have problems lifting Jude up, getting out of bed, and when I stand up from a chair it takes a moment for my body to move right. It's awful, but I now 100% sympathize with people with chronic back pain. If any of my neighbors would like to know why I don't let Em ride with anyone under the age of 21, it was a young boy that hit us.
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I know that was a negative complaining moment so let me leave you with something positive regarding the accident that will give you chills. When we were turning, and flipping I had mentioned it seemed like we were moving in slow motion. Everything was silent although I could feel the impact of glass, and steel. Suddenly I felt calm, and I heard a woman's voice say "Jennifer, you need to stay away from the glass", and I felt someones arms around me. Once at the hospital I recalled the incident, but I figured it was adrenaline, or something. Soon they brought Emily to me, and in her tiny little voice she said "Mommy who was the nice lady in the car with us". No joke! My mom? To this day Emily remembers three things, 1. the blood on her mom 2. The nice fireman with the glove balloon trying to cheer her up 3. The nice lady in the car with us that helped us.

So anyway, here are some pictures from the weekend. We were very excited to see Jude respond to our cat this weekend. He seemed like he could see Scooter, and would smile when he came near Jude. Although, I am beginning to think he just feels the cat because he is showing more indication to me he is very visually impaired from the stroke. I will keep my hopes up though :)

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My living room which is now Emily's Smile Box headquarters, I think I am going to have to give up the dining table. Also a donation of about a 1000 beanie babies this weekend. I was febrezing them so they were all laid out.

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Friday, August 28, 2009

A ton of updates.......

I am currently sitting here on hold with my health insurance company to find out what will, and what won't be covered regarding adaptive equipment with Jude. Luckily, we have the medicaid to back us up, but the wait is longer through medicaid on certain items, mainly the tomato seat. I have been told they like to initially deny the claim for several pieces of the equipment. Anyway, I am convinced that there is a handbook they pass out when you start working at a health insurance company regarding the treatment of customers who have special needs, or chronically ill children. I am pretty sure they tell you to hang up on the customer at least three times if they are calling regarding anything serious. There is also a protocol to leave you on hold for so long you consider hanging up anyway. If you do happen get an answer it's generally so muddled and full of lingo like, "bulletin point 0271 authorized by a doctor", that you are lost. When you ask what something means they simply reply, "I cannot answer that I am not a doctor". Well you are the one covering it, or not covering it, so why wouldn't you have the explanation of what the bulletin point is that you are requesting. A simple explanation that it's critera a special child has to meet before the coverage is allowed would have sufficed, but I figured that out with my own research. By the time you get off the phone you generally want to throw your hands up, or fly somewhere and ring someone's neck. The good news is after many attempts I finally found out Jude's tomato seat should be covered, but with out of pocket expenses. My understanding is the medicaid will pick this portion up if they deem the chair medically necessary. Let's hope they do, because the amount of medical bills stacked in my bill pay slot is ridiculous! Anyway, there is my vent on health insurance companies. I cannot imagine having a child that has cancer, or another issue that you have to fight every other day with the insurance company. It truly makes you wonder what the possible benefits, and non benefits would be regarding the health care reform.

Months ago when Emily, and I were sitting on the couch, and the idea for Smile boxes were born, many thoughts ran through my head. Emily, and I were looking at the Kids are Heroes website, and she expressed interest in helping other children. We put our heads together regarding ideas, designs, and other miscellaneous things that go into a business. She was so excited as was I, and I watched her idea take off. I told her that I have always wanted to work in charity, and provide services for others. She told me that she would like to do that too, but little did we know that her little charity would take off so quickly. I have told you that we were contacted by a radio station regarding spreading her boxes. We received word from them yesterday that they are wanting to partner with us, and reach up to 84 market areas. I clearly noted that Emily would like to still deliver boxes, and that we would like the siblings to be included as well as the patients. We don't know all the details yet, but just the mere thought of being able to reach that many kids makes Em and I happy. Maybe in the future I can work with these kids in some capacity full time, and make their lives a little brighter. Crossing my fingers! We meet with the station for more details next week, and at that time I will reveal who we have talked to, and the plan. You might say a little prayer this all works out, I believe it could really touch many lives.

So a few days ago my pregnant friend Sarah at work came in from a sonogram. She looked at me and told me she realized she was the exact time in her gestation as I was told something might be wrong with Jude. I was then told I had to decide within three weeks whether I was going to keep him. Just uttering the words, "keep Jude" sends shivers down my spine. It's like for a second Sarah knew exactly how I had felt, and she looked a little scared. She said she is so attached to her baby now, and couldn't imagine any bad news. I nodded my head, and just said "I know" because I really did understand what she meant. Then yesterday one of the women on her pregnancy board lost her baby. I could tell the thoughts creeping into my friends head, and I assured her not to worry. I joked with her that statistically I have her covered, but assured her that she cannot go through this pregnancy worried, and I am sure everything will be fine. I told her I understood how she feels but from the other perspective because I AM that person everyone looks at and thinks, "Man I am sorry for her, but I am sure glad it didn't happen to me, or my baby". I know, I understand, and it sucks, but I get it. I told her it's the reality that this can happen that is causing her worry. I think because I am so close to her and had issues, and then the women on her board it make things tangible, and scary. I assured her again that I have every feeling that her baby will be a bouncing healthy baby girl!

Jude had a decent night, and is going to his grandmothers today. We have noticed an increase in saliva with him that is causing him to choke. I am hoping that when we get more seating for him this will become less of an issue. I just wish the insurance would hurry so we could get the chairs, but I know it's a long wait. I am also really wanting to get Jude a Wingbo which is a swing where special needs kids and be on their tummy more. I am going to pass that information on to a few people because his bday is coming up, but I have also heard insurance is starting to cover it. Although, since it's a new product I am sure I would have one strand of hair left on my head before my insurance, or medicaid covered it.

Also, I would like to let everyone know that I heard from the doctor that treated Jude in the ER. Yes, the one that did not administer an IV, or want to take the X ray. I do have to commend him on calling because I am sure it wasn't an easy task to complete. He didn't directly say he was sorry, but he did acknowledge the situation should have been handled differently. He explained that he had know way of knowing the situation would deteriorate so rapidly in 24 hours, and assured me in the future he would keep that in mind. I hope so, and thanks again to the fabulous nurses, and staff that helped us through that situation.

Thursday, August 27, 2009

Did you know we herd cows?

Last night we relaxed a bit. Emily studied the history of our city for a project she is doing, and informed me all about past events. Then Mike, and I watched, "I love you Man", while I held Jude. Jude was a happy little camper that he was being held, and cuddled for so long. Although, while holding Jude I noticed his toenails were a light shade of blue. I crept my hand up to his fingernails, hoping they were not the same color, I was disappointed! There were a few that were the same shade of blue, and one that was even darker than the rest. I rubbed Jude's hands and feet to get his blood flowing, and wrapped him tight in a blanket. I checked his nails about twenty minutes later, and they had pinked up. I am unsure if this was another aspiration issue, the lung issue, or if he was just chilled, whatever it was I didn't like it. I have already called Mike this morning asking him to check Jude's nail color,and currently they are fine. I sometimes wonder, if since some disabled children wouldn't be here without medical intervention, if life doesn't find some other way to create issues to try to steal them from us. That is probably a random thought, but it has crossed my mind.

Jude has already gained 10 ounces since he started the pediasure, so it is doing the trick. I will post a few pictures of my new chunky monkey, and also a visual on his tantrums. This is just because I laid Jude down on the bed, notice there are no tears.
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and a second later he had stopped crying, but he looked like a member of the mafia that was going to beat me up.
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Emily has started back on her schoolwork, and was studying about our city. Turns out our city was known for it's "cow herding", really? Could it not scream Texas any louder? So she was researching how to draw a cow.
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Also, one of our friends is back in the hospital, and her little brother was hunting a smile box the last time they were in. I was heartbroken to think he may be back there again without a smile box, so we are shipping him one. That led to us offering to ship individual smile boxes upon request. Please check out our great labels that Corpies printing donated to us. Our boxes look very snazzy, and Emily is so thrilled! The boxes have large labels for the side, and a small label for the top. I truly appreciate Corpies assistance in getting this completed. We also had an old friend of mine call and offer the use of his trailer for the Christmas Smile Box delivery, and he is even having a magnet created for the side of the truck. Last night while we put together the smile box I am shipping off today Emily took her time looking for the perfect stuffed animal. I pulled out a maroon teddy bear with a green ribbon, but could tell from her expression that was unacceptable. I then held up a large frog, and Emily assured me that was much better for a boy!
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So this morning I got up with Emily to help her get ready for the bus. Generally we get up pretty early, and after she hops on the bus I still have time to lay back down, and snuggle with Jude. The little boy across the street normally comes over to get Emily, and they walk down to the bust stop together. This morning he never showed, so I sent Emily over to ring his doorbell. There was no answer, and suddenly I saw the large yellow vehicle looming around the corner. Emily took off down the street so she could be picked up, and I stood there wondering what happened to her friend. I came back in the house, and locked the door, shut off the light, and headed back to my room. Suddenly I heard the doorbell, and I knew immediately who it would be. I opened up the door, and there stood Casen with his bottom lip stuck out, "Did you miss the bus" I said. "Yep" he replied, and he looked rather worried. I told him I would grab my keys and we would try to catch up to the bus, but suddenly Mike came out of our bedroom scooping up his keys. Mike took Casen all the way to school and I know that made Em's friend breath a sigh of relief. Mike came home, giggling about how worried Casen was, and I hugged him for being a good friend by taking Casen to school. Mike said "I told him to tell Emily he ran all the way to school". More poor little gullible daughter will probably believe him.

Wednesday, August 26, 2009

Another day

Sometimes our hearts get tangled
And our souls a little off-kilter...
~Sera Christann


Tuesday, August 25, 2009

a funeral, and some prayers

As I sat there at Kyle's funeral I began to feel a bit panicked feeling. I looked around the chapel that was all to familiar for me. Old memories of loss, and grief began to creep up my back like ants crawling on my skin. I have buried many friends, and family members at that very cemetery, including my mother. The chapel never seems to lose it's familiar smell, and the stained glass beaming out of the hole in the wall never changes. I swallowed hard, and contained my feelings of being so uncomfortable.

I looked around at all the sports memorabilia, and listened how Kyle was an avid sports fan, and a collector. I heard all the great words that everyone had to say about him, but it was his mother I ached for. I watched her turn to her family during the video montage, and you could tell she was crying. How sad, how heart wrenching.

I had just seen Kyle a few months ago, but I was not overly close to him. I had arranged a get together for old friends at a local establishment. When I saw him we hugged, and we all swapped old stories. We laughed about good times when we were young, and we chatted about current times. We all took pictures in many different poses but, the issue of Kyle's health never arose. I knew he battled a disease after high school, but I never knew it returned. I could tell he didn't look well, but I attributed that to the prior battle he had fought. It turns out that little did any of us know Kyle had been fighting a battle for a really long time. Even many of his close friends were a bit shocked. So cheers to the man I used to hang out with, may he rest in peace, without any pain anymore. I will only remember Kyle with fond memories!

I am not sure why mothers lose their children, but it seems a crime. Those in the world not affected by profound grief cannot truly relate to the despair you feel when you lose someone so close. I pray for you that have escaped that horrible feeling will never feel it. Even though Kyle's funeral was sad, most funerals are. I remind myself how his short life touched many others, and wish him the best on his journey.

Now, since this week seems to be engrossed with horrible news I would like to ask for some prayers for a fellow blogger, and friends. You would think being told that your child has a problem with their brain would be enough, you would think losing one child would be enough, but no fate always throws more blows. So please send her some words of encouragement I am sure she could use them

Now tomorrow I plan to get on here to report I have received good news from someone. I expect to hear 100% positive news, because today has been a doozie!

fits, and school

Last night was interesting indeed. Jude wanted no part of being put anywhere but in my arms, he wanted to be held PERIOD. If you started to put him down his lip would quiver out, and his eyes would turn down to cry. I also noticed he was again a bit warm so I tried to administer some Motrin. The motrin set off a complete and total melt down on Jude's part that left us all trying to get him to breathe properly. He cried for so long, and so hard that his eyes were puffy, and his breathing was extremely rattled.

In addition to his complete melt down during the medication debacle he also had a melt down prior to his therapist arriving yesterday. He was so enraged into a fit when she arrived that there was nothing she could do with him. She told Jude he "needed to get himself together because she would be back later in the week". I am unsure if this is Jude being manipulative, being a normal toddler, or if this is some sort of sensory issue. I never know with Jude, and it's so frustrating at times. Last night we discussed possibly letting him "cry it out", but there is no way because we had the run in with his breathing issue, and that was a bit scary. Jude also had a few violent spastic movements last night, so we are still working on his medication levels.

Emily spent her last day of summer playing with friends until it was just to late to play anymore. They had a last night supper together, and they all came home smelling like kids that have been outdoors. She took a bath, laid her clothes out for the next day, and hopped into bed. Today she got up early, and was energized, and so excited. She carefully put her first day of school outfit on with pride, and bounced to me to fix her hair. She was my little punk princess in her cute hot pink skirt, leggings, and black shirt with funky zebra high tops. I knew she thought she looked cute, and I thought she did too.
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So we had to reschedule our meeting with the radio station because something came up. It actually worked better for us because unfortunately, I have a funeral to go to today. An old high school friends passed away, which is very sad. He was only 38, and his family is in my thoughts.

So if you would like to see an example of what will be in Emily's Christmas Smile Boxes, then please take a gander at this lovely picture.
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So lately I have been hearing a lot of negativity being discussed and I am unsure why. Maybe the heat is getting to everyone. Yesterday I read a comment from someone that had been posted on a website about how annoyed they were hearing about back to school talk. Granted there are many things that get on our nerves at some point in lives, but why do some people let ridiculous things get to them so? I tend to just walk past, scroll past, or ignore subjects that might get on my nerves. At some point life always hands us something difficult to deal with, so why not reserve your strength for that moment? Why be so judgemental?

Anyway, I will get off my soap box. Please say a few prayers for our friend Kendall she is back at Cooks, and I can tell her parents are exhausted.

Monday, August 24, 2009

weekend update with Jenn

Sorry I didn't not update all weekend, it was honestly crazy. On Saturday morning Emily, myself, and Jude all went to have our hair done. Yep, Jude got his very first hair cut, and my husband called me Delilah the rest of the day. Here are some pictures.

A happy Jude prior to putting his big boy cape on:
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Getting his cape on and starting the cut:
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A little mad at Ms. Kim
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All done!
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I have mentioned that my hairdresser Kim relates to our situation well because her younger sister was in a terrible care wreck that caused a traumatic brain injury. So she really took her time with Jude, and worked with his lack of head control. Mike's friend Kevin owns the salon so they refuse to let us pay, and in turn Mike does work for them. It's so great! Emily even got big girl highlights, and Kevin personally did the honors.
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In the end they both looked adorable:
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Jude ate pretty well this weekend, but his seizures have greatly increased. He even woke up out of a deep sleep last night with one. I believe this is due to the change in medication from liquid to pill form. Since Jude is now eating the pedisaure well I am wondering if we should switch back to the liquid, and put it in the bottle.

My friend Jennifer allowed me to read her copy of "My Sister's Keeper" by Jodi Picoult. I am grateful she allowed me to borrow the book because with my schedule it takes me weeks to get through one. Although, as I read this story I find myself constantly running to Mike to read him excerpts that relate to our life. Last night I read the excerpt "It takes only thirty seconds to realize you will be canceling all your plans, erasing whatever you had been cocky enough to schedule on your calendar. It takes only sixty seconds to understand that even if you'd been fooled into thinking so, you do not have an ordinary life". PROFOUND, and so true! I had to read that one outloud, and Mike just shook his head in agreement. I think read the comment to him about how you cannot sit around waiting for someone to get sick or die, you have to continue living a normal life.

Throughout my life I have always wanted a little fish pond in a garden wherever I lived. I thought I would share what my husband put together. Someone was throwing out some flagstone, and he was able to pick it up. It made me very happy that he put this together, and I just love it!
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Tomorrow I have a meeting with the radio station I mentioned regarding Emily's Smile Boxes. I am afraid out Christmas boxes are on backorder so I don't have a box to actually take, therefore I am taking the contents minus the box. I hope they will be able to picture what they will actually look like. I am a bit nervous, but Mike is going with me, and so is Jude. Emily has school, but we have promised to relay all her information properly.

Friday, August 21, 2009


Last night went fairly well which is great because we needed a night to relax. I do have a funny story, about last night when I got home. When I walk through the door from work I always hug Emily, and then pick up Jude. In my mommy voice I coo at him, and give him big hugs. Normally he will smile, and squeeze me when I pick him up. Emily will laugh at how much he smiles, and then we all sit down. Last night when I picked him up he smiled, but then whimpered, and smacked me in the face! I figured this was just an accident due to his Cp, but then he did it again and harder. I looked at Emily and said "I think he is hitting me on purpose". Emily rolled her eyes and very nonchalantly said "I told you he had been pulling my hair!" So after getting smacked two more times I grabbed Judes hand, and firmly said "No sir, you don't hit.". He looked at me..............and smacked me again. Emily laughed, I put Jude down. My little baby is having toddler tantrums.

Last night I made a bottle 1/2 pediasure, and half formula, and even threw in some rice cereal. At first Jude struggled and did not want the bottle, so I held it out a bit from his face. Jude kept trying to put his mouth around the bottle, but I would not put it in his mouth. He finally got frustrated, and latched on to it, he then drank the entire 8 ounces down quickly. Mike had gone to get groceries, and when he got home I said "Guess who ate 8 ounces with formula and pediasure?". He said "you?". Smarty pants!

Tomorrow is my sisters bridal shower at my house. I am hoping things go well, and that Jude does well. His fever is 100% gone, and he seems to be feeling better. He is eating a bit better but it is a struggle. So I guess our roller coaster is again coasting level.

I have not heard back from the radio station on Em's boxes, but I hope to soon. We have all her Christmas supplies in except the boxes themselves, but they will be ready to fill. We are starting to fundraise again to replenish her supplies once the Christmas boxes are delivered. We will be attending a function in Dallas where we can sell items to help her cause. If you know of anything that can be contributed just let me know. We can use new items such as crafts, etc.

Thursday, August 20, 2009

someone fix the roller coaster

We are still on the never ending roller coaster that starts creeping up the hill, goes back down, levels out, and then sharply turns again. I try to joke with my friends, laugh, and giggle, but honestly the stress is killing me on the inside. Mike is at the end of his rope with everything, and I see him truly struggling. He doesn't sleep well, doesn't eat well, and screams more than anything. It's also affecting Emily, and I know it. I am trying to balance it all out, but honestly unless you are in my shoes you just have no clue how hard this is. One minute Jude eats, and the next he doesn't. One minute we are fine, the next we aren't. It's a never ending maddening situation.

Yesterday Jude ate pretty well taking in 19 ounces, and probably half of that was pediasure. He also took some solids, so I think that is pretty good. I noticed he still sounded pretty rattled which makes me wonder if that the pneumonia going away or aspiration. We have to schedule the appointment with the GI to find out for sure. Last night we were ecstatic and mentioning how Jude had not experienced any spasms since starting the Depakote sprinkles. Then BOOM he had a very long drawn out full on seizure last night. I have not experienced one of those in awhile, and the heartbreaking part of it was Jude knew what was going on. His body would relax in between the clusters, and when one would strike he would whimper quivering his lip. I cried for him because it was so sad. Luckily Emily was at my cousins so she was able to escape that situation. Today Jude was again refusing to eat, but Mike tried the sippy cup and he gobbled down the formula/pediasure. It seems if he refuses the bottle we try the sippy, and vice versa until he picks one to eat from.

So I mentioned we are stressed. These are not items everyone chooses to talk about on their blog, but I have promised to be 100% honest. I want to share everything I can through this journey so people reading it in the same situation are not alone. The other day I had a woman email me telling me "thank you so much for admitting how angry you are because I am too". I am angry! I am a plethora of emotions from feeling blessed, to stressed, to happy, to sad, to angry, and more. It's okay to have these feelings, because no one expects to be thrust into this type of situation. I talked with Mike in length today about if it would be better if he worked, and we changed roles. I love my job, and have a great boss, but my family does come first. Mike let out a lot of emotion explaining if anything happened to Jude, and he had not been with him everyday he would lose it. I feel the same way, but I remind myself constantly Mike has lost 5 children. Doesn't seem fair does it?

I simply remind Mike that our little Jude is a fighter, and that he will be fine. There are many of our friends in the same spot whose children are thriving, and I point out their ages. Mike says he feels he is in the trenches of battle, and I know that has to be tiring. So I have come to the conclusion that all we can do is march on with our daily routines. I try to make our lives as normal as possible and carry on. In my mind this is what we need to do, and I will drag Mike along with me by his collar (smiles). I remind myself that the recent stress levels probably escalate our sometimes irrational thoughts regarding Jude's situation.

One great piece of news... for a change. I came home last night, and Mike was holding Jude under his arms and had him propped on the counter. I said "Hi Jude" in my high pitched voice, and he IMMEDIATELY whipped his head around quickly looking right at me. He did that twice last night!!

Wednesday, August 19, 2009

A sippy cup full of supplements

So it was obvious I was pretty down yesterday, and I am attributing that to stress and lack of sleep. Last night Emily crawled in bed with me until Mike finished his movie. I began to drift off, and suddenly jerked myself awake. I am sure everyone has done that before. Emily said "Mom what was that??". I just replied "stress", and fell back to sleep.

I had mentioned in my blog that Jocalyn had suggested trying Pediasure. Jude is going to be one in two weeks so I decided we were close enough to try this. So I stopped at Tom Thumb, and browsed the pediasure and supplemental drinks. I decided on the new mom to mom brand, and picked up a pack of Vanilla. I also picked up an Avent sippy cup to see if that would make a difference. Once I got home we prayed this would work, and started getting everything together. I noticed prior to feeding him that Jude's color was looking a lot better, and he looked more alert. He had eaten very little that day so I just chalked this up to the antibiotic working. I took the sippy cup, and tried to give Jude some, and at first he resisted, then he clamped on, and sucked it down. He LOVED the pediasure, and I felt so much better. By the end of the night he had 8 ounces of the supplemental drink, and 1/2 a jar of mac and cheese down him.

He is still slow eating today, but he is doing better than he was. Mike called about an hour ago to tell me he had mixed 3 ounces of formula with 3 ounces of supplemental, and Jude drank it all. He still sounds a bit congested after he eats so we will watch that. Thanks to Jocalyn for the advice, and to all that contributed information. I know the G button is great for some, and would probably make our lives easier, but I prefer to avoid it.

On another note that hospital we took Jude to on Saturday where we had the issues called me today. They are going to follow up on what happened, and let me know the results. I asked them to please commend the nurses, and I thought it was brave on their part to stand up against the doctor. The lady that called was very nice, and her main concern seemed to be Jude.

Tuesday, August 18, 2009

yet another update

Yes I am updating again, my blog seems to be my outlet when I am emotional. Plus, I am just not in the mood to talk right now at all, and this will keep everyone updated.

Mike took Jude to the follow up with the neurologist today. I have not caught the entire conversation between Mike, and the dr, but I do know he gave us a referral to someone about a g button. The doctor seems to think it won't be a permenant solution, but none the less it's a horrible thing for me to hear. I have been very emotional, and angry since I heard that news, and I am unsure why. The doctor said it's imperative Jude gets his medications, and this will make things easier for him. I try to take everything in stride, but hearing they want to put a feeding device into my child sends me in a tail spin. There is a part of me that has always thought that if someone needs a feeding tube, or button then they have a failure to thrive for a reason. Of course, when it's your child you are staring at with the issue, all your prior thoughts, and soap box rants crumble to ashes.

It's amazing how we focus on individual words with disabled children like "aspirate", and we pray that word won't come up. Then all of a sudden a semi hits you and you are told it has nothing to do with aspirating, and just a sensory issue. Sensory? When did that come into play? Someone changed the rules! Even though the doctor said "sensory" he also said he cannot confirm 100% this is due to the sickness, the medication taste, or what. He did say he thinks a lot of this is behavorial, so is that good that Jude gets angry?? First, off I think all the went WAY to far because Jude wasn't treated properly on Saturday. Second, if feeding issues are going to continue I guess we have no other choice but to get the g tube.

So why am I at the end of my rope today? I guess we all go crazy every now and then, and as long as it doesn't last more than a day, then I figure I get a pass. Having a disabled child is very stressful on a marriage, and your family. Plus, you always hold out a bit of hope that your life will return to normal and will include that child. Then when life slaps you in the face to wake you up, it's disheartening. It's like falling asleep to dream that your child can run, jump, talk, and walk, and when you wake up your child needs a G BUTTON. Shouldn't it be the other way around? Shouldn't you have a nightmare, and wake up to everything being ok? My life seems to be reverse, and there are many moms out there walking this road with me. Be thankful if you have healthy babies, is all I have to say! So I am going to hold out hope (like I always do) that changing Jude to depakote sprinkles vs depakote liquid, and once the pneumonia clears up 100%, then Jude will eat again, and we can avoid this surgery. We are going to have to take him to have him evaluated regardless, so I guess we will see what they say.

Thanks for letting me vent, and throw a pity party. I will be hosting a better part tomorrow I promise. Oh and I had to share my experience with an X RAY tech. The other day she came in to take Jude's lung X Ray, and she popped his bed up saying "He needs to sit up". This all before I could yell he cannot sit up, and his little head flopped forward. Poor girl, I know she felt bad.

Also, Jocalyn just emailed me, and said we might try pediasure. I think I will pick some up tonight! I will try anything right now!

FYI ~ Don't call Mike right now he is in a horrible mood! He wants some peace. I know everyone wants to offer words of comfort to him, but he is a bit of a recluse when he is upset.


Jude did much better eating last night, but we are back to the drawing board again this morning. He is again refusing to eat, and this leaves us bewildered. We are back to wondering if this is an issue from the sickness, the lack of fluids for so long, or what. Jude got up about 3am again, and we were up with him until about 5. He whimpered, and made noises in his bed, but was quiet if I held him. He did take two ounces, but that was all before he screamed because he didn't want anymore.

I think Mike is at the point he just wants them to put in a G button, I on the other hand really don't want that. I know it could make our lives easier, but until I am convinced this is neurological I don't want to proceed. I have seen Mike deteriorate in the last few weeks both emotionally and physically. I feel like I am running in circles trying to keep him sane, my family together, and my baby well. I am hoping with further doses of the antibiotic he will continue to improve. I am at a loss though......

Monday, August 17, 2009

A hospital and home

We are home, and I feel like I have been through a war because I am so tired. Although, like I said........we are home, it's good to be at home.

Here is the full update. I got up this morning early and tried to feed Jude, but was unsuccessful. Jude just didn't look right again, his lips were chapped, his mouth was dry, and overall he wasn't my lil baby boy. Mike was going to try to feed him when I was leaving, and we both made the decision he needed to go to the hospital. I got in my car to go to work to get things wrapped up for the day so I could leave, and on my way there I burst into tears. I felt panicked, and not myself, and I called Mike. Mike sounded a bit panicked too, and just said he thinks Jude needs fluids. I made my calls to the neuro, and to the pediatrician. Our wonderful pediatrician Dr Scott calmed me down. I explained I feel like this all could have been handled Saturday. He agreed, but said "Not to excuse anyone by any means, but I don't think Jude is at the point of no return yet". He then explained he feels Jude really needs fluids, and once he has them he will eat better. I then talked in detail with the neuro's office, and they called ahead to the ER for us. That didn't do much good because we waited almost 2 hours to get in, but they rushed Jude back when he had a seizure. The doctor had sent us to Dallas Medical City Childrens hospital, so this was different from the hospital Sat, but the same as the one where Jude had his EEG.

A nurse came in and greeted us right away, and then a very nice Nurse practitioner came in. They both sat down, and talked to us.........and listened. I wish I could give some type of life coach speeches to doctor's about how important it is to LISTEN to your patients, and their parents. We told them the whole long story about how Jude ran a fever close to 104 for 3 days, how he then started refusing food, our trip to the ER, the diminished breath sounds, and more. I told them I really felt Jude needed an IV Sat, but the doctor never gave him one. They both shook their heads, and they began to listen to his chest. The nurse practitioner nodded her head positive, and said "Yes I hear diminished breath sounds too". Then the primary doctor came in and listened, and Jude was then signed up for blood, Iv's, and another chest X ray. It was a long drawn out process, but we felt like we were in good hands. The IV was a NIGHTMARE, and I think it was rather hard for them to find a good vein for awhile. Once they got the IV in, and Jude got his drip he immediately looked different. His heart rate went down, his color looked better, and he began to smile!!! After about an hour into the drip we tried to feed Jude, and he GOBBLED down 6 ounces. It was the best sound I have ever heard. All of a sudden I realized I had not been over dramatic about the situation because I saw tears falling from Mike's eyes. He said "I just couldn't handle losing him, it's the best sound I have ever heard" (the sound sof Jude eating).

After awhile the pediatric nurse practitioner came back in. She again sat down but this time to go over all the results. She said the X ray did show that Jude had a viral infection in his lungs that had possibly infiltrated to pneumonia. She said it was a great thing we had gotten the Ceftin, and it looked like the antibiotic was starting to fight off the infection. She ordered another bag of IV fluids, and said she would check back a little later. Before she left I said "In other words the nurse at the other hospital was 100% correct, and so was I because he needed an iv". She smiled, and Mike looked angry about the situation.

Jude continued to look so much better the more fluid he got into him. He had 1 wet diaper, and even went to the restroom. He ate another 1/2 ounce, and his stats looked wonderful. We breathed a little easier. Jude's seizures had increased due to the lack of medication but I feel like we are old pro's at handling those demons. So they came back in and gave us the all clear if we felt like going home. She instructed us to continue the Ceftin, work on getting fluids in, and follow up in the morning at 10am with his doctor. We felt comfortable enough to leave because he was well hydrated. When we got home Jude refused a bottle and his medication again, but this could just be a residual effect.

I want to personally thank all our friends, and family for checking on Jude today. I feel like there were people that were genuinely as terrified as we were. If you had seen Jude you would have understood why we were so upset, and needed comfort. Again, thank you everyone including our wonderful neighbors that kept Em, Michelle at Children's, and our great friends that texted all day. It seems our little one got the help he needed to tackle this illness, and get over the hump. Also thank you to my work who worked with me today.

Now I am just praying this is nothing that neurologically affected him (can that happen?), and Jude gets back to 100% himself!


Jude is not well. He still has not eaten, and his mouth is now lacking moisture. I am so angry with the doctor at the other hospital we visited that I could scream. I feel like this could have been avoided, and a simple IV of fluids would have helped me. They told me there that he was "borderline" dehydrated and his heart rate was very high, so why wait?? Now here we are and it's Monday, I have to be at work, and my kid is on his way to the hospital again. I talked to my boss, and I am leaving today, but I am still so angry. Maybe I am just using him as an outlet, but I am still upset, and so is Jude's dr.

We are at a loss. Jude's pediatrician seems to think his refusal to eat is still because he is ill, and that once he has fluids he will eat again. I pray that's the case. I was a bit panicked when I called him this morning. He joked with me to ease the tension, and said I held it together so well all weekend. I told him that was true, but now I am really scared. He explained he doesn't think Jude is at the point of no return, and that the fluids will help. I am scared though.......something just isn't right, something is setting my mommy fears off.

We are on our way in. I will update when I can.

Sunday, August 16, 2009


Our great pediatrician did get Jude's medication called in. We had to go to several pharmacies to get the prescription filled because there was a back up from the manufacturer. On top of that the insurance company wouldn't approve the fill because it was named brand vs generic...sigh.

We gave Jude the medication with little complication, but he would not take a bottle afterwards. Although, despite our best efforts Jude is just not eating. The 7 ounces have come and gone without much more. I got him to take a 1/4 jar of apple delight, but he will not take fluids unless I squirt it in his mouth. I even broke out the sippy cup tonight, and dribbled some apple juice into his mouth, and rubbed his throat to get him to swallow. So what is this? Is this residual effect of being sick, the beginning of a failure to thrive, something neurological. I HAVE NO IDEA! I don't know what to think.

Jude has an appointment with his neurologist Tuesday, but we are unsure he will last without medical attention until then. If he eats tonight we think he will be okay, but if he doesn't Mike will be taking Jude into the hospital tomorrow. The last time he had an IV of fluids he started eating normally again, we can hope this happens this time. I dread the thought of him having a feeding tube.

We are so at a loss, and so torn as to which direction is the right path to choose.

Watching Waiting

Between 10pm, and 8am we finally got about 7 ounces down Jude. He woke up about 3am, but at that time wouldn't take any fluids. He simply wanted me to hold him, and he was whimpering a bit again, and breathing fast. I held him in bed, and he went back to sleep in my arms. We slept together for awhile, but I never fully slept. I would catch myself listening for Jude to breathe rather than falling asleep. This morning he woke up, and seemed a little more alert, which was encouraging. Jude's neuro called earlier than expected at about 8:15 am, to check on his status. I really like a doctor that thinks about your child, and follows up asap. I explained that Jude's color looked a little better, he was still breathing a little fast, and we got 7 ounces down him. He said he would be okay with us watching him another day IF our pediatrician would call in some antibiotics. So I put a call into the after hours line to get a hold of Jude's primary doctor. After going through the nurse triage the doctor connected directly to us. Have I told you I love his pediatrician??? He listened to my entire story from yesterday regarding the doctor, Jude's high pulse right, the low blood oxygen, the opaque coloring on the X ray, the motrin helping, etc. Anyway, he is hilarious. He doesn't beat around the bush when he thinks a doctor has made a mistake. He deemed the doctor new, and wasn't happy that Jude wasn't treated. He pointed out we have a special needs child, a dipping blood ox level, an opaque coloring on an X ray, and said "Um he should have been treated!" He went on and on about the situation, and he cracked me up, but I will spare you the details. Anyway, he agreed to call in some antibiotic with the firm understanding that if Jude's color or breathing change in anyway, we call 911, or go in asap. I told him I understood, and truly appreciated his help.

Right now Jude is sleeping, and coughing a bit. We are waiting on them to fill the medication, and then we are going in to pick it up. The doctor said he is giving him a very high dose, so I am hoping Jude handles it well. He said it would be equivalent to what they would give him in the hospital, and he is using Ceftin. Em is sitting here watching MTV Cribs, and cracking me up with all her comments about people's elevators, and bling.

So basically we are watching Jude, and praying that he quickly recovers. I am thankful for the two best doctors in the world (in my opinion) who have listened to us, and followed Jude this weekend. We are also thankful for all our friends and family who have been checking on him.

Saturday, August 15, 2009

a day at the hospital

Let me tell you my day, because trust me it's interesting!!! Jude is STILL not feeling well, and just not acting normal. Something told me that Jude needed to go in, and get fully checked out. So I drove him to Dallas to have them look at him, and let me know what they think is wrong. Jude is still not eating, and when we give him a bottle he screams at the top of his lungs. He is whimpering in pain, screaming out for no reason, and just not himself. Once we got there we were assessed in triage, and they immediately took him to the back. They took Jude into a room and hooked him up to blood/oxygen, and cardiac monitors. The nurse left the room for a minute, and suddenly the room flooded with people. I noticed shirts that said "paramedic", and someone that had to be a respiratory therapist. They tossed around medical terms, and they all listened to Jude's right side repeating "diminished breath sounds on the right side". I also noticed Jude's heart rate was very high and up to 170 at one point. Everyone left, but our nurse and she explained the doctor would be in soon. She then left the room, and I calmed my screaming child.

Soon the attending, and nurse came back in explaining the doctor would like a urine sample, and a glucose level. I was a bit confused because it seemed the chest issue would be of greater importance, but I am not a doctor. The urine test was traumatic, and I do not want to go through that again. There was a changing of nurses, people coming in and out, and more listening of Jude's chest. Jude received an order for some motrin, and I explained he had never received motrin again, he liked it!!! After the motrin Jude's heart rate decreased a bit, and his blood oxygen level returned more normal. The doctor then came in to let us know what he thought. He told me that he isn't concerned about Jude's chest because everything clinically tells him there isn't any pneumonia. I explained what happened when we first got there, and how several people were saying they heard diminished breath sounds. He then went and called in two nurses to ask them who heard the diminished sounds. The nurse spoke up that she did, the attending did, and respiratory did. They then traded off listening, and debating over the sounds or lack of sounds. The doctor said he saw no cause for a chest X Ray, and to my great surprise the nurse said "I am sorry doctor but I disagree". He seemed rather perturbed, and when another nurse listened and agreed there was an issue. I then spoke up and I said "I would like a chest x ray, I don't want to leave with any question that there may be an issue". So the doctor reluctantly complied, and Jude got his X ray. On our way to the X Ray room one of the nurses apologized for the scene, commended me for saying something, and said that all the nurses thought Jude needed an X ray. So once we got in the room I was greeted by several friendly radiology techs, and one who mentioned Jude looked familiar. She then said "It's baby Jude! I follow your blog". That made me smile, and it turned out she was a friend of a friend.

Once back in the room the nurse came in to inform me something showed on the X Ray, and they were reviewing it. She then listened to his chest again, and took his blood pressure. Soon the attending came in.....not the doctor, and explained they found some opaque coloring on the X ray that indicated some hardening in the bronchial wall?!?! Medical terms annoy me. Anyway, my understand is that it could have been a viral infection. So I learned they were sending us home. I asked about fluids since Jude has only had 2 ounces in 24 hours, but they said he was borderlined dehydrated but not overly dehydrated. So do we wait until there is a serious issue?!?!? I was a little taken back, but didn't know what else to do. So then I heard our nurse quietly talking to the paramedic, and respiratory, and I heard "You document it and write it down I stand behind what we heard". So she comes in to discharged us, and was so nice. She then turned to me and said "I know I am younger, and not as experienced as the doctor, but I feel it's my responsibility to tell you I disagree with the doctor. I think it's possible Jude has pneumonia, or something else going on." In other words she couldn't keep him, but felt he needed to be admitted to be watched. So she taught me how to look for indications of pneumonia, and assured me she would follow up on his case. I knew she wasn't trying to alarm me, but educate me, and I respected her for that. She also assured me radiology would review the films, and if they were overly concerned they would call us back. They had two trauma's come in so radiology was behind. It made me feel some better the radiologist would review the films, but I agreed with her. Jude is not himself, and sometimes a mothers instinct outweighs clinical data, or a doctors best educated guess. She said she believes Jude is refusing his bottle due to a sore throat, and the lack of energy or air to suck it. So I am carefully watching him. I respect both the doctor, and the nurse. I can say that it's rare I find a nurse that is vocal, and really looking out for my son. It meant a lot to me that she risked getting in trouble to voice her opinion. The one good news we got was that Jude is not aspirating if this does turn into pneumonia they feel it's due to a common cold, or virus.

We are squirting liquids into his mouth to try to keep him hydrated. If he is still not eating by Monday, then back we go. I called to inform my family what happened, and my boss texted earlier to check on Jude. I appreciate everyone's prayers and thoughts. I only hope we can get some rest tonight, because I know I will be listening for him breathing. He is currently in Em's arms whimpering, and we just want him to feel better.

** UPDATE ~ I put a call into Jude's neuro to explain the entire hospital visit today. He listened, and was so kind as usual. He said that it's very normal that if a child is dehydrated that pneumonia will not fully show on an X RAY. He said he wouldn't be surprised if Jude got an IV of fluids that the pneumonia would present clear and evident. He wants us to continue trying to get fluids into Jude tonight (so far he still won't take any), and if we are not successful we will check him into Medical City tomorrow. Jude will get a round of fluids and antibiotics. Also, I am sorry if my blog was full of errors earlier, I was writing in a hurry.

Off to the hospital we go

Jude did fairly well last night, but not well enough. He only drank 10 ounces yesterday, and that was forcibly. I had left work at two to come home, and was able to get a little fluid in him. Then at 3am he woke up with a fever, and I tried to give him some more fluids with some Tylenol. The medication broke the fever, but he didn't get any additional liquids. When we try to feed him Jude screams like I have never heard him scream before. We have tried everything, and even giving him pedialyte by droppers. Today he has only had 2 ounces, and we are rounding the corner for noon. I have made the decision to take him into the hospital. It may be nothing, but I would rather be safe than sorry. I debated on whether to go to Dallas med city where his neuro has rights, or Children's where there are amazing gastro specialists. I think I have decided on Children's because this seems like it's a gastro problem. I am wondering if the reflux hasn't caused damage to his throat. I will keep everyone updated.

Friday, August 14, 2009

The fever is back with a vengence.

Jude is pretty sick. He woke up last night at 2:30 screaming with a 103.6 fever. We finally got it down some, and then began to wonder if this was truly an issue with teeth. The fever seemed awfully high for teeth. Jude finally fell back to sleep a little before six. I mustered the courage to text my boss and ask him if I could come in an hour late. He agreed, and I laid back down for a few minutes, and ........ Jude woke up. Mike took him in the other room, and I followed a bit later. Jude was shaking internally and his breathing was shallow, so we called the doctor asap! According to the doctor Jude's fever was to high to be teeth. So Jude is currently at Baylor with the doctor getting checked out. I am waiting to hear what the diagnosis is, and will head that direction if he is admitted. Ugh, I hate being away from him when he is ill.

** update ** The doctor said Jude's ears, nose, throat, and flu test are all clear. He believes it's something viral and has told us to watch him over the weekend. He said if his fever is still high on Monday to bring him back. I trust our doctor, but I am not sure this is 100% accurate, but we will see. I believe Jude might have something going on internally in his stomach somewhere. I also put a call into his neuro to see what impact his high fever will have with his seizures, and seizure meds.

Thursday, August 13, 2009

Fever and bands

Yesterday, Mike called me at work to tell me Jude was not acting like himself...again. He wasn't eating, was rather lethargic, and also a bit grumpy. He then called back to tell me that Jude had a temp of 101 under his arm, well crud. So I raced home to size up the situation, and see what I thought we needed to do. By the time I got home from work Mike had placed cool rags on Jude, and administered Tylenol. Luckily he had gotten his fever down some, and Jude was resting. The old "let the fever burn out what's wrong", doesn't work with Jude because of his seizure medication. I really feel his fever is because his two front teeth are coming in, so I am not overly worried. Although, I did notice a bit of a rattle in his chest, but he had been crying. So we will keep a watch on him. He was rather restless all night, but this morning he was sleeping soundly when I left ... of course. I was worried last night because his fever got pretty high, but it did go down, and according to Mike is still down at 10:30.

Here is a video of Emily working with Jude to keep his head up. This is from the same strand of pictures I left before.

Emily went to spend the night with a friend last night, and Mike and I relaxed watching tv. Actually, I watched TV while tying tiny black bows on my sisters wedding invitations. It was a nice night. Anyway, there is a music channel on right now that is hosting informational movies, and more on bands that are attending Lalapalooza 2009 in Chicago. Mike had recorded the show for me, and he had me come upstairs to watch it. Guess what it was? Yep the old documentary Depeche Mode 101. That's right people, I was a little 80's/90's waver girl. Laugh all you want, but I had a blast in the old days. I had the cute black patten loafers, the big wavy hair, the black jacket that matched my shoes, that went over my Z Cavaricci or Pepe jeans. Many of the mid thirties crowd is laughing right now reading this, because you know you were wearing THE SAME THING. Anyway, my mother grew up loving Led Zeppelin, and taught me to love them. I grew up adoring Depeche Mode, and still love them. I caught my husband smiling at me as I sang every lyric to every song featured on the show last night. I have always been a fan of music because I believe you can find so much emotion in the lyrics written by true artists. So float back in time with me for a second and admit you remember the cover to this album.
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I have to admit I have been listening to their songs all morning at work.

Besides Jude's fever it was a relaxful night, and I enjoyed my time with Mike.

Wednesday, August 12, 2009

A few updates, bunnies, and rings

A few weeks ago I won a copy of "All the Bunnies" from Max and Ellen at If you are not familiar with the book it lists stories from families living with special needs siblings, children, etc. It is geared towards estate planning for special needs children. This is so their siblings do not take on full responsibility both financially, and emotionally after their parents pass. The first story in the book was so touching to me that I read it out loud to Mike, and Emily last night. At the end of her story she listed rules she lives by now, and I smiled as I read them. They included treating others with kindness, treating the disabled as respected humans, and finding something to live for and focus on. I agree 100%, and she also said the impact on siblings living with disabled brothers, or sisters mostly depends on the families dynamics. I couldn't agree more with that too. Although we have little financial resources anymore we have put into place an arrangement if something should happen to Mike, and I. So thank you to Ellen for sharing some great stories with me through "All the Bunnies". My little bunny makes me smile everyday!

Second item I received from someone was from Nick emailed me about my blog and PR. I do not use Jude's blog for that purpose, BUT it was rather ironic he emailed me. I had to tell him a story which I will share with you. When Mike bought my wedding ring it was just beautiful, and exactly what I wanted. It was an antique style white gold ring with a beautiful modest diamond in the center, and sapphires down the side. It wasn't a large ring, but it was perfect for me. I wore the pretty ring with pride, until my finger started breaking out. I figured it might be cleaner, soap, or a variety of issues, so I tried everything in the book, but it all failed. I finally took the ring, and my finger in to a jeweler to ask what the problem was. It was a classic case of being allergic to the nickel in the white gold. That's right folks.........I have a beautiful wedding ring, I cannot wear, and neither sale for what it's worth. So I have sported different rings from simulated ones that look like mine, and more. One quirky thing about me though is I am not a huge fan of jewelry. I love to look at it, but when I wear it I tend to take it off throughout the day. So a big flashy ring isn't important to me at all. So Nick at Tungsten Wedding Rings sent me this: Image and video hosting by TinyPic
It's plain, it's perfect, it's me! Thank you Nick! I now have something that is mine, and I can wear all the time!!! Also, they have wonderful men's rings on his site.

So last night I had the best time with Jude. When I got home yesterday I looked at him, and made a decision. I told myself that I know in my heart that Jude will never be able to live on his own, but that I have confidence he will do MORE than expected. I prayed over him.........yep I did. It's been awhile, but I prayed that Jude would be able to hold his head up, sit up, use some words, and eventually walk. I prayed for those specific things. I felt better after I prayed like, a weight had been lifted off of me. I am a christian, but I have had issues with people pushing religious reasons for Jude's issues on me. {FYI-It doesn't make me feel better}. Anyway, last night I relaxed, and I enjoyed Jude's company. I had him "dancing" with Emily on the bed, and he giggled. He then kept keeping his head up like I have never seen him do before. I kept telling Mike that he was keeping his head up, and Mike kept blowing me off saying "He will when he wants to". Although, later that night Mike was holding him on his legs, and he got tears in his eyes saying, "Look at him Jenn!". I just said "I know!". Here are some pictures.

Jude starting to lift his head:
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Jude: Has his head up
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Jude: Head started to fall, but he caught it, and kept it up
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Jude: Keeping his head up in his high chair {before his dreaded bath last night}.
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I would also like to thank Sarah for making Emily a new logo for her Smile Boxes.
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I have not heard back from the radio station that contacted us yet, but I know they are so busy. I am really hoping the more Em's charity progresses the more we can help others.

Tuesday, August 11, 2009

My children

You are the poem
I dreamed of writing
the masterpiece
I longed to paint.
You are the shining star
I reached for In my
ever hopeful quest
for life fulfilled..You are my child.
Now with all things
I am blessed.
~Author Unknown~

No busy writings today, just reflection.

Saturday, August 8, 2009

A bunch of pictures, and lots of news

So I anticipated our meeting with the "Holland Mafia" all day on Friday. If you are wondering the reason for the name please reference the poem "Welcome to Holland". On our drive there I was my normal nervous wreck due to Dallas traffic. Since our car wreck I tend to be a "nervous Nellie" in the car. Once we got to Jason's Deli we entered the restaurant unsure what to expect. We thought we were the first ones there, but soon noticed a couple walking in with a little boy, and a new daughter. The gentleman was Trevor, and he quickly came up asking if we were there to meet Katy. We told him we were, and we immediately started talking about our situations. Soon everyone arrived, and we all gathered around the tables we had carefully placed together. We seemed to knowingly leave seats between each other for purses, diaper bags, and more. We then all began chatting reliving our tales of our emotional journeys. Sometimes a person can feel most alone in a room of people, but this wasn't the case Friday night. I felt very welcome, and in the company of those that truly understood. We all scanned each others children looking for resemblances to our own child, and for possible progress our own children could make. We talked adaptive strollers, therapy sessions, state level help, and more. Mike joined in all the conversations, and when we left he said how pleased he was we went. Sometimes I have to drag Mike by the ears to events, but this meeting was so worth the struggle. We met with Katy and Charlie from, and Erin and Fletcher from, and Jamie, and Milo from My pictures are a bit fuzzy, I apologize.
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So Saturday I was trying to feed Jude some baby food, which is always a task. I would scoop the food in, and he would spit the food out, it's a never ending battle. He was exploring the world of chicken and apples, when Emily walked by. I noticed Jude "saw" her, and turned his head. This immediately sent goose bumps down my arms, and I got very excited. I told Emily to come back, and talk to Jude. Which initiated the reactions you see in the following pictures. Granted his head would fall due to his lack of neck controlled, but he really worked at interacting with her. Ignore the food dripping down his mouth, if you can.

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Later that day, we also tried out Jude's new eye patch he needs to wear. He wasn't very fond of it, but didn't complain much once we got it on correctly. I honestly, think he fussed only because we were placing something on his face. I noticed his right eye got a bit larger when we patched the left eye, but I didn't notice anything else.

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Last, but not least we received an early shipment of all the fillers for Emily's Christmas version of her Smile Boxes. My dining room has a mountain of supplies in cardboard boxes.

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Emily carefully sifted through each box looking at all the wonderful items that will be given to children that need them. She smile so big that I could tell her heart was beaming, and this made me so happy. She really liked the candy cane pens, and carefully sorted all the activity books. She then helped me combine everything into several boxes, and we stored them all in the dining room. I would like to thank everyone that saw Emily on the news, and those that have sent beanie babies, or money. Your contributions will really help her cause. I hope that the IRS pushes her 501c3 through soon so we can work on getting donations from large corporations. I know that will really help her as well, but every donation big or small will make a child smile.

So the big news I had was that a local radio station that has a charity contacted Emily about possibly partnering to make her boxes. I don't know any other information, but even being approached about this is such an honor for us. Emily was so excited that she squealed at the top of her lungs. Then she told me her boxes have to be made with love, and not in a factory...ha! She is so funny..... Anyway, I don't want to reveal names, etc but I will when they time comes. I have to say I have been personally drawn to this charity since the DJ started it, and supported them through the years. Now the charity is even more on my heart because of Jude. I am so proud they contacted Em, and I ask for some prayers that this all works out. Her little boxes will be able to reach so many more families with their help.