Wednesday, March 31, 2010
Jude had several more seizures throughout the night, and Mike mentioned giving him his new increased dose of the Felbatol. I am so resistant because it seems his seizures have increased, he is throwing up, and he has insomnia since we started the Felbatol, why make it worse?
We are taking another walk today, and heading back to the park. This time Mike wants to come with us too.
Tuesday, March 30, 2010
So let me explain why I probably lost my marbles, and boys might want to tune out. Being a woman isn't easy, we have crazy emotions boiling through our brain, and issues monthly that no one should deal with. I have been on Zovia (birth control) for so long that coming off of it is leaving me reeling! Although, since I have been off I haven't had anymore chest pain at all, and my blood presure is back to normal. Although, I am probably certifiably crazy right now, and the wretched pain in my abdomen compares to labor, BLEH! As teenagers we wrestle with dealing with monthly issues, as adults we wrestle with birth, and as seniors we lose all our hormones so we are even more crazy. When do us women get a break, huh?
Anyway, we will skip past my woes, because despite my craziness I feel pretty good today. I heard back from MDCP (medically dependent children's program) yesterday, and they advised me they have already been informed that Jude's situation has deteriorated, and therefore they should be fine with increasing his respite hours. In addition ECI is also ramping up to give Jude 10 respite hours so this should help some with losing the nurse. We are taking Jude into the GI doctor to schedule his G button surgery. Several people I have talked to in the industry seem to think we won't have an issue getting Jude's nurse back, but we shall see. We miss how attentive our nurse was to Jude, and he just loved her. If I cannot be there everyday then it made me feel better she was. Mike is wonderful with Jude, but sometimes daddy's need a break, and a little help. The lady at MDCP was so nice, and very helpful. She sympathized with our situation, and said she would get us the most help possible.
The good news is Jude kept his food down yesterday, which is a blessing. I am pretty tired of cleaning up puke, and will sure be glad when he gets through this phase. He also did well in therapy yesterday, and is making more audible sounds.
I am considering hunting a sitter for this weekend, so Mike and I can have a date night, I think we need it. Also, remember that May is Stroke awareness month. Strokes are one of the top ten killers in children afflicting 6 in every 100,000 kids. 1 in 4000 babies will be affected by a stroke, that's a staggering amount. Help support stroke research to stop this affliction.
Monday, March 29, 2010
This weekend went a bit better. Saturday we went and took some pictures of my friends children. She liked the photo's Mike took of Em, and she wanted some for her family. He got some great shots, and Mike's mom watched Jude while we were doing the photo shoot. We weren't gone long, and when we got back Jude was all smiles for mom. I also found a place that can finally fix my wedding ring so I can wear it. They can simply coat the inside of it was Rhodium, which is what I had requested before. For some reason the other jeweler told me it wasn't possible. Then my sister came over for dinner, and it was a great Saturday until Jude again projectile puked everywhere! My sister, and Emily ran to the rescue. Emily again had cleaned up puke, and put everything in the washer.
Sunday I had two back to back Scentsy parties, which was wonderful, although now my head is killing me from carrying around the table I use. Emily went with me, and she deserves a big treat for helping me so much this weekend. She was even great when I got home because she played with Jude, while I took a quick bath. When I came into the living room this is how I found the pair watching TV.
Jude then threw up again on Sunday night, but just a little bit. He has also started with looser diapers, so we are again wondering if this is the medication. We have held off increasing the Felbatol, until we know for sure. No news on the nurse, but Mike is getting some help from my aunt, his mom, and ECI for the time being.
Saturday, March 27, 2010
Charlotte, Jude's nurse called earlier, and Mike broke the news to her that the nursing has been suspended pending the appeal. She was said, BUT she does have a friend that needs help for the next six weeks. She also said she wasn't very happy with the provider we have been using, and we are both talking about finding a new place together. In addition she said she was very surprised they cancelled the service because of how needy Jude is. We just ordered the pieces for the suction unit, and hopefully she can stop by to show us how to use it properly. Anyway, I also followed Jocalyn's suggestion and called respite about increasing our hours to subsidize for the nursing. They were very nice, and said it very well could be possible. We still need to make the appointment to see the doctor about the G button. We have to schedule the surgery, but like I said we are trying to push the surgery to the middle of May if possible.
I appreciate everyone's nice comments, and advice this past week. I felt so negative with the emotional comments over, and over. Although, I always promised to be honest in my posts. I am off to take Em on a walk, enjoy your weekend.
Thursday, March 25, 2010
The day itself actually started off rather positive. I had slept, Jude SEEMED better, we were extremely busy at work, but I was making progress, etc. Then I get the famed call from Mike, not only is he extremely upset because Jude has thrown up again.......not once but twice, but they have cancelled our nurse AGAIN! This time they state the nurse is not medically necessary, based on no g button. Our provider who submitted for the 20 hour nurse was so let down, and you could hear it in her voice. She said she has never seen a child more deserving of nursing due to seizures than Jude. The problem is the state doesn't recognize seizures as a sole issue to get nursing. Jude's issues range from being legally blind to severe seizures and the rest of the list is very lengthy. Since we have been over his issues before it serves no purpose to repeat them, although I can say that Jude's last EEG showed constant seizure activity. He fits almost every criteria they require for nursing, but not every one. Also for some reason it makes more sense to the state to require another $50,000 hospital stays than to provide a part time nurse. We don't even want the 40 hours we will get once Jude had a g button, we just want someone to monitor Jude's stats, and help Jude progress. So here we are, Jude is in his second week of felbatol, and he is constantly throwing up. He cannot keep his food down, he is pale, he is weak, his seizures have GREATLY increased, and we all know his pulse ox is down. Yet he doesn't need a nurse right? He threw up so hard this afternoon that it went into his mouth, eyes, ears, everything! We aren't sure if the throw up is from his medication, or his cold he is battling. I know our case is still not as severe as many other children's, but goodness it takes a toll. Don't even get me started on those that live off state means, and the reform that won't help Jude. Lord have mercy, we will be here all day, and some of you may hate me by the time I step off my soap box. In the next few months we will have our nurse back, and we may even consider finding a way to pay out of pocket for our darling Charlotte. It's just crazy to me how many hoops we have to jump through.
So Jude fell asleep about 9pm, and we had put him in his crib to sleep prior to his final meal, and medication. I went in to check on him about 9:30, and I noticed he looked very pale. He woke up, and glanced at me, but didn't have much reaction. I then checked his nail beds and they were BLUE! I was really worried, so I went and grabbed Mike. After much protest I ran down the street to grab our neighbor that I knew was a PA. He so graciously came up, and listened to Jude's lungs. He said his lungs sounded pretty clear, but it was obvious Jude was "struggling" with mucus. He acknowledged that Jude's color was fluctuating, and he said I had a right to be concerned. He raved at how big Jude had grown, and praised Mike on being a great dad, which caused Mike to cry. Keep in mind my darling 6'1 husband was red eyed exhausted from lack of sleep so the tears flowed freely. He then said my medical knowledge of some specific terms fell under neurology, and went over his head. He said you could tell we have been dealing with this for awhile. He was so very sweet to Jude, and suggested we put him on his side. After hearing all Jude's medication, and symptoms, he was so nice, but shook his head and said "we are playing with match sticks", and he is right. It's a reality we deal with, and so do many other moms I know. Despite how accepting special needs parents are, we still wish our lives were quote unquote normal. We wish our children didn't have these problems, but they do, and we are accepting. We understand there is no circus waiting in the background with some glorious sequined outfit, and a cute little trapeze. No it's just our everyday life, where it's hard to run to the bathroom to actually use it, much less change in it into some great glorious costume. Although, our everyday lives teach us more than we could ever hope for, and for that we are thankful.
Before leaving our house the PA looked at us and said "Be thankful for everyday you have with Jude, because he will serve a purpose". Amen, he will, and he does. Scratch the trapeze outfit, I am back to pajama pants, and a cute baby in my arms.
Luckily Jude slept the rest of the night, and didn't sound raspy at all. He was started to stir this morning when I left so we will see how the day goes. Mike is without the nurse, and his mom for the next two days, so I am hoping Jude is easier. He gets so frustrated and upset when Jude is difficult, and it just ruins his entire day..........and mine because he calls me upset. So here is hoping for an easy day for Mike.
Wednesday, March 24, 2010
Last night after I got home I had informed everyone that Jude had take 16 ounces. I was sitting down, and knew it was nearing time for his medication so I made a little pedialyte. I gave him a few drops, and he seemed to like it. Then we were sitting there, and Jude threw up what looked like the entire 16 ounces he drank prior in a volcano like method. Mike was in the shower, I went running in with Jude in tow covered in Pediasure, and I was too. It was all over the couch too, but by the time I came back out Emily had already cleaned it up for me. So then Mike started screaming at me that he didn't need the pedialyte, and I tried to explain I wasn't trying to give him any when he threw up. Plus, that amount of food coming up means it had just been sitting in Jude's stomach that entire time, and was coming up regardless. So now we are at each other's throats. I wish we could get the nurse to come at night so we can just sleep, I think it would do us good.
Jude whimpered, cried, and squirmed the majority of the night. We have tried Motrin, his meds, his acid reflux meds, etc etc. At one point I mentioned to Mike I thought Jude might be hungry, so he got up to feed him, and shut my door. I either slept so hard the time he was gone, or Jude wouldn't eat because he was back in what seemed like two minutes. Jude's nurse comes again today, but only for four hours. I am glad she is there to watch him.
Tuesday, March 23, 2010
The doctor inspected Jude from head to toe, and seemed concerned, but non chalant like he normally is. He actually pulled out his tongue depressor, and gagged Jude until he threw up, three times. I know it's disgusting, but Jude threw up a ton of mucus. He then informed us that Jude's airways had been blocked by large amounts of mucus. They then took his blood/ox again, and it was at 96. The doctor said he was happy with that reading. So he then informed us Jude has a virus, he wasn't ruling out RSV, but his cough "sounded different" than RSV. So he wrote us a prescription for allergy medication, talked to the nurse about procedures at home, and we then talked about oxygen. He said he doesn't believe in oxygen at home because he believes the oxygen level will always lower during a seizure. Strange thing is our neuro said the same thing. The oxygen at home seems to help establish the continuous need for a nurse, but it seems no one no longer believes in it.
Anyway, Jude is still running a fever, coughing like crazy, but he has now eaten 16 ounces since they cleared his airway. We are keeping a watch on him, but we feel a lot better.
Hopefully this will go away soon, but if he does the rapid breathing again tonight I am taking him in.
Saturday, March 20, 2010
So last night was rough. We were exhausted from the weekend, so we just laid around, but we noticed Jude wasn't acting like himself. He was very fidgety, and he was coughing a lot. We have had an issue with Jude gagging lately, and we aren't sure if its teeth, medication, or mucus. Anyway, so I finally just laid him in his bed last night, and I heard him cough, and checked on him several times. The last time I heard him cough I figured he was alright, and didn't check on him right away. UGH, of course that's the one time he had throw up all over himself, and the bed. I called Mike down, and we bathed Jude, changed his sheets, and got him dressed again. We spent the better part of the night with Jude crying, coughing, or him having seizures. I counted 26 seizures last night. So I am at work 100% exhausted today. I really don't even have the energy to talk on the phone, but I have to. I emailed the neurologist to see if this is an effect of the new medication, but Mike feels like it's Judes teeth. I am not convinced of that. The nurse is there with Jude now, and I have asked Mike to let her know I would like the suction unit used on Jude today.
So my family is in town. I am going to run by my cousins on the way home, but I am sending Em home to rest. She was up last night too, because of Jude, and was late to school this morning, poor thing. She also said she had a nightmare that really scared her, which is strange, because I did too. We are hoping for a better night with Jude today, and I will update once I know more.
Oh and Miss Em won overall photogenic, which I am THRILLED about. Her natural photo won over all the glam photo's etc, she also got Personality Supreme (go figure). She had a wonderful time, and she is so thankful to the people that helped her attend.
Friday, March 19, 2010
Thursday, March 18, 2010
Wednesday, March 17, 2010
"All of these lines across my face
Tell you the story of who I am
So many stories of where I've been
And how I got to where
But these stories don't mean anything
When you've got no one to tell them to It's true...
I was made for you
I climbed across the mountain tops
Swam all across the ocean blue
I crossed all the lines and
I broke all the rules But baby
I broke them all for you
Because even when
I was flat broke
You made me feel like a million bucks
Yeah you do and I was made for you
You see the smile that's on my mouth
Is hiding the words that don't come out
And all of my friends who think that I'm blessed
They don't know my head is a mess
No, they don't know who I really am
And they don't know what I've been through
but you do And I was made for you...
To me music is so much more than just a steady beat. I love the lyrics, the instruments, then entire package that brings a really good song to life. My aunt text me tonight that the song "Hang", on my playlist is here favorite. Great minds think alike, because it's a song you sometimes have to search for.
Anyway, I just thought I would share. The above song is the very first "I love you" song I played for my husband, and I still smile when I hear it. It's a complicated song, but it deals with complicated emotions.
I have had lots of insurance quotes at work today which I am hoping is a signal that the economy is beginning to change. Although, Emily's donations have started to decrease, so it's a whole give and take in my two worlds.
Jude's nurse comes today, and he seems to just adore her. Jude is extra happy on the days Charlotte is there. He loves his dad, but I think having a woman giving him constant attention is up Jude's alley. I have seen a subtle decrease in Jude's seizures, but he is still having them. The seizures he is having also look a bit different then what they were before. We will slowly increase the new medication, and it's suppose to increase the effects of the Depakote too. We will see what happens. We had gotten Jude a cute little swimsuit for the summer, but we learned this medication can cause overheating. So we will keep him at his indoor therapy pool.
Monday, March 15, 2010
I am encouraged at this recent sudden development of a want to progress, but I am discouraged at Jude's lack of sleep. It's only been two days, so I will reserve any other judgements for a little bit longer.
I am still battling with all my emotions from last night, but I know they will soon be settled. Thanks for the recent comments, and emails, I so appreciate it.
Sunday, March 14, 2010
So today was a bit emotional for me for various reasons, but still a good day. We did indeed make it to Jude's friend Frankie's birthday party. Frankie has special needs as well, so they have become buddies via the Internet, and other close friends. We didn't know very many people there so I tried to chit chat, and soon it was time to go pick Emily up from her dad. So I left with "Thank yous", and a gracious attitude. It was Em's dads weekend, and we try to meet halfway so he doesn't have to drive all the way out to us. Once I picked Em up she informed me that her dad was soon going to introduce her to his "girlfriend". She then said his girlfriend is only 25, with long black hair, and very tall, "all the things she didn't want". I replied, "Emily, she isn't me, so her hair may be a different color, and for all you know she may be an exceptional lady that you will really like". She said I was right, and that she hasn't even met her yet. I guess despite how happy children are in their current blended marriages, they still hold a picture of their original parents in their mind, and it's hard to let go of that picture perfect family.
So I said I experienced many emotions today, and I was telling the truth. The birthday party, made me realize Jude's disabilities in blazing glory, but when we got home I realized he is still my Jude. He snuggled close to me as I rocked him, and he would just lay quietly on my chest. He is in his own way an adorable little person who is very happy. I also met several foster children of Frankie's sister, who were adorable. That led me to thinking about all the children who really need love in the world, and if you search the foster sites, you will understand what I mean. I was almost a factor of the foster care system, so I know first hand that there are many deserving children out there that just need a hug, and someone to care for them. It makes me sad there are so many children in the world in rough situations.
So the final factor. Friday night I had a Scentsy party at a friends house. First of all let me thank my wonderful friends, and family for supporting me with Scentsy. I have had many people ask how to help us, and I have just asked them to thrown a Scentsy open house, and they have complied. We are finally getting back on our feet, finally getting our savings back, and finally standing tall. So anyway, I met my friends adorable daughter who just turned two years old. She was so cute, running around getting into all my boxes, and handing each scent to me to put out on the table. She would say, "Here ya go" each time she handed me one of my scent jars. I watched her eat her food with her fingers, walk on her own, and play with all her toys. I wasn't upset, I was adoring her, because she was so cute. It made me remember what I have mentioned before, that Mike, and I planned to have another child after Jude. I was wishing we could have a girl, but I would have been happy for another little boy too. So on top of watching her for the first time, Mike mentioned he had wanted another child too. He then mentioned he STILL wants another child, and not because Jude isn't normal, and not just because of the cord blood we want, but just because..........hmmmmm. Could my body withstand another? Could our finances catch up in a couple of years to think this is a possibility? Would it be good to have another child join our family? Just in case? Or just because? Who knows. It's always been something fluttering around in my mind. There is the want, but there is also a part of me that doesn't want to go through having another child just in case something does go wrong. Plus, I want to make sure Emily has enough money for college. So again, it's just a thought that passes through my mind sometimes, and now I know Mike's mind too.
*** I put asterisks here because I had stopped typing last night with the above paragraph because Jude had woken up angry again. It was about 12:30 before I got to bed. I then was woken up by Jude at 3:15, and we didn't get him back down until 6am. They said insomnia is a side effect of this drug, but would it happen that fast? On top of that I was so sick to my stomach this morning, probably from giving another seafood place a try, when I shouldn't have. BLEH! I am hoping I make it through the day at work today. Jude's nurse is at the house for 8 hours today, so he will be well watched. She is monitoring his vitals, and administering his medication this morning. Forgive my emotional rant last night, I was just tired. Although, I did promise to always share my feelings and be truthful.
His seizures have been more limited today, so that is great news. I reached out to a two moms who has used Felbatol before, but I only heard back from one. She did not experience any issues, so that was a relief.
We are so tired, but today is Frankie's birthday so we are going to do our best to get to his party. I woke with a headache, but it's easing up some, and we need to venture out. Now let's just see if I can get the hubs off his PS3.
Saturday, March 13, 2010
I appreciate everyone's comments on the Keto diet, and I am still researching it. We are very hesitant because of the unknown lasting effects on the kidney's and liver. Mike, and I used to avidly work out, and consulted a nutritionist on our meals. Now we have no time to work out, but we do remember what we were taught. I am keeping in mind that the medication could have a lasting affect just as well as the keto diet could. So I think it is just going to require more research, and education on our part before we make a final decision.
Mike just came downstairs, and told me that the Special Olympics will be near us on March 27th, and they need volunteers. We are thinking about going, if we are able to. I am also still working on Emily's Smile Boxes picnic, and hope to have more information on that soon.
Friday, March 12, 2010
On top of this issue we have had with Jude, we had an issue with the nursing yesterday. I received a called from the place that pays the nurse and they told me Medicaid denied her help, and my health insurance would only provide "skilled" nursing. I FREAKED OUT! Here we are with Jude suddenly developing this terrible cough in the morning to the point they think he may need a nebulizer. Then on top of that we are starting a new medication, and they are taking away his nurse? Plus his seizures are out of control, so mom had a meltdown on the phone with the insurance department. Luckily, we found out that the issue was the paperwork was not properly filled out by the agency. The nice lady with the insurance company promised they would approve the nurse once the proper paperwork was sent in. So luckily Charlotte was there again today. So that was a huge load off my mind. I feel better with the nurse there if Jude is going to start these new meds.
Jude woke up very early this morning, and Mike got up with him for awhile. He coughed, and coughed until he got all the stuff out of his throat. Finally they came back, and I cuddled with Jude in the bed until I had to get ready for work. Last night Jude threw up all his Pediasure, so I am hoping he keeps his food down today.
I am looking forward to sleeping in tomorrow, and I am off to battle the DMV about 4pm, wish me luck.
Thursday, March 11, 2010
So Mike, and I are still at a loss, but we are being pushed towards the medication route. I still struggle wondering if there is anything surgically that can be done in the future that will help Jude. Jude is a very sweet baby, and he giggles, and smiles but I still hope one day I can see him progress further. I snapped this picture of Emily holding Jude, and it looks like Jude is standing, what a sweet sight! Let me point out that Jude kept his head up for about five seconds prior to it falling right after I snapped the picture. It's a strange relationship with emotions in the world of special needs. You are so thankful for such small things, but at the same time so angry at the large milestones you miss.
Regardless, I am so happy my little boy can smile and laugh, it warms my heart!
Emily's interview came out with CBS 11, http://email@example.com. I just love how articulate my child is, and how unafraid she is of the camera. I am however, disappointed they didn't mention her website, or how she can accept donations. She cannot keep sending out Smile Boxes, without donations. If you watch the video you can see that she involved other kids this time, and even had them sign a postcard letting the patient know that particular person made their box. Emily also received two letters from little girls yesterday that had received her boxes. One little girl was still in the hospital, and Emily emailed her back asking if they could be pen pals while she is in there, I thought that was sweet. She also received a letter from the little girl who had a stroke, she is in the hospital in Arkansas. She hates that the kids are sick, but she likes hearing from those that receive her boxes. I think the letters inspire her to continue her cause. Now, we just have to figure out how to achieve her goal of getting Smile Boxes nationwide!
Wednesday, March 10, 2010
My understanding is this medication is normally given to adults. I trust our neurologist completely, and this is our assumption of what his reasoning is. He mentioned the name Lennox-Gastaut Syndrome, but has never officially said Jude has it. Although I know our Dr, and he would probably just say "Yes it's likely he has it, but it doesn't matter because he has to be treated regardless of a label". Basically it's a very severe form of epilepsy. You can read about it here: http://www.ninds.nih.gov/disorders/lennoxgastautsyndrome/lennoxgastautsyndrome.htm, it's my understand they now think strokes can be a factor of this syndrome. So my guess is that the Dr already knows the other medications will not work for Jude. It's also the reason he immediately went to Depakote vs a less aggressive seizure medication. He knows Topamax, Pheno, etc won't work, so he is jumping ahead to one he believes will help Jude. So what do we do? We did find some great posts regarding the medication like this one: http://www.medications.com/effect/view/1222. So we are still struggling with this medication. Mike did say he would want Jude to have a G button prior to getting on the medication because of the possible vomiting, and weight loss.
Poor Jude, just breaks my heart. He is so cute, and he just smiles when he is held. He is a great baby, but we know he won't be a baby for long. So our assumption is the Dr will tell us we don't have to give him the medication, but without it he will never be more than three months mentally. The is a part of us that is accepting to that, but is it fair to Jude? It's a struggle wondering which path you should choose. Before Jude I always was a great decision maker, but now I get stuck.
Jude woke up at 3:40 last night, and was very upset. I brought him to bed with me, and he was quiet, but when I tried to move him back he got upset again. That time Mike grabbed him, and Jude was quiet on Mike's tummy, while Mike slept. Then Jude got upset again, so I took him, and we cuddled up and slept together. He was quiet as long as I was sleeping with him. This morning Jude woke up with a horrible frog cough, so I guess he wasn't feeling well, and wanted to be held. I accommodated his request, and enjoyed it.
Thanks for the comments, and emails offering to help with Em's picnic.
Tuesday, March 9, 2010
It's called Felbatol. It's very effective for seizures, but it's effective as an add on drug with other medications.
This is my concern:
"Unfortunately a number of fatal cases of a plastic anemia, and hepatitis have been linked to this medication, and most physicians only prescribe it when other treatments have been ineffective. The most serious side effect is anemia, and liver failure." They suggest blood tests every two weeks to start, and then every three months following. The dug can also cause less serious effects like insomnia, and headaches.
I guess there isn't a seizure medication that comes without risks, but I wish there was. I am sure they give you the worst case scenario, but still. So the big question is do we really want to walk down this medication path. It's the old question, is it the disease that kills the child, or the fight from the parents seeking normalcy that kills them? GEES! To much for my brain to take in.
Mike and I will be discussing the pros and cons tonight.
Yesterday I looked at some pictures of the kiddos in the mommy group I was in prior to having Jude. I was so happy to see them all smiling, walking, and running, but it made me sad too. I wondered what Jude would look like standing upright, and holding miscellaneous items in his hands. I wondered what he would look like playing ball with Mike, or chasing the puppy around the house. I wondered if he would run and jump in my lap yelling, mommmmmy. There are still those fleeting moments that cause that deep dark pain the the pit of my stomach to rise. Wondering is a word I try to avoid.
On a more positive note I have been tossing around the idea of holding an Emily's Smile Box picnic in the summer to fundraise. It's fairly easy to rent a facility in our area, it's just coming up with activities to go along with the picnic. I thought I might could get people to donate cotton candy machines, etc. Any other ideas?
Monday, March 8, 2010
Our weekend was eventful, and it ended with a Scentsy party yesterday at my friend Linda's house. It was a great party, and I booked two more open houses off her party. I am thankful that my side business is doing well, and I hope it continues to. Today I am working, dropping off taxes, and seeing my friend Carrie's new baby. I have a full week of drivers license renewals, car inspections, and the other stuff that I am very glad will be over soon.
So since I am disclosing that the Scentsy went well let's talk about Material possessions. I am not one for fancy cars, real expensive jewelry, or other items that some enjoy. It doesn't make their wants wrong, I am just different. Although, I do have one material possession that I enjoy, and I wish was paid off......my HOUSE! If I was able to pay off my house I would be in a MUCH better position, and could spend so much more time with my kids. It would take a huge load off my shoulders. So my lofty goal is to save as much as possible, and try to pay it off within five years, like I said it's a lofty goal!! I am not sure I can save that much, but I can try. So what is your one material possession? You dream? Other than having our children healthy, I am talking tangible items. Indulge me, and discuss.
Have a great day.
Sunday, March 7, 2010
To top that off my friend walked up who just lost his wife, in a very tragic circumstance. TELL ME the words "how are you" did not escape my lips again? Oh GOOD Lord they did!!! SOMEONE SHOOT ME! I just sighed again, and said "I am sorry, I know what it's like to always be asked, how are you". He was so nice, and just said "You know if people don't ask it offends me, so it's like they are da%%% if they do and da%%% if they don't" I just laughed and replied "so true, now when I am asked how we are, I just reply the truth". He made a big gesture and said "AWKWARD, do they run away in terror?" I just laughed and shook my head yes. He then said "Well I just reply, I am great I puke butterflies, and sh%% rainbows, so things are great". Leave it to an old friend that could rank as a current stranger to show me the proper way to look at life with laughter, and humor. He has been through so much, but could still offer a laugh to an old friend. It was very appreciated. I told him I was stealing his line about pooping rainbows, that might be better than telling the full truth.
It was nice to see old friends, and yes to someone there I probably do spend to much on social network sites, but you know what? I enjoy it and it makes me happy, and that is what counts :). Jude stayed with his grandma's, and we were there to pick him up by 10:15, and he was wanting his mommy. We took him home, and had a nice rest of the evening just relaxing watching Saturday Night Live, it was a nice night.
Friday, March 5, 2010
Jude wanted mommy last night, and NO ONE ELSE!!! I couldn't even hand him to Mike to go to the bathroom without him crying for me. As soon as I took him he stopped crying, it was crazy! He truly knew who was holding him, and who wasn't. I enjoyed that he wanted me, but it made it difficult to move around sometimes. I ended up going to bed with him early, and laid down beside him patting him. Another thing Jude did with me, is play! I had him on the bed talking to him, cooing, and tickling him, and he was laughing, and wiggling around. He seemed genuinely engaged in the activity. He would look away if it became stimulus overload, but for the most part he participated. He was suppose to have his blood drawn today for his Depakote levels, but due to my appointment that will have to be done Monday. I will let Jude know I saved him a little stick today.
Tomorrow we make our big Smile Box drop off, Em has 100 boxes going to Children's. We also were suppose to have 40 large Build A Bears. My friend Sandy is saving me from the Fed Ex disaster and picking up the Build A Bears at their station in Irving, DON'T ASK, lol! grrr. I really have wonderful friends. My friend Roy is an attorney and has donated his time to do Emily's non profit, and more. Today he is working on the trademark attorney to take care of Emily's company because of a few recent issues. We so appreciate everyone that has helped us, and all the helpers that are coming tomorrow. We hope this inspires other kids to get active in their community.
Thursday, March 4, 2010
Believe it or not, Jude is having fun here. When Emily drags him around on his blankie he will squeal with delight. As you can see we have added to the Smile Boxes that will be dropped off on Saturday morning at Children's.
Wednesday, March 3, 2010
Mike called earlier, and Jude was very upset. I think he may be cutting another tooth because he has been a little irritated lately. Although, he was wonderful last night at a function for Smile Boxes Emily had in Dallas. Right when the main speaker came up, and the room was very quiet Jude decided he was going to "talk". It was rather comical. Once we got home Jude and I were both exhausted, and we went to bed while Mike had some me time. I hadn't even realize Mike had come to bed when I started hearing Jude wheezing. It turns out he must have been snoring, but it sounded terrible. I checked on him three times prior to waking Mike up who said "Well get up and check on him", "Yeah thanks I have THREE times buddy". Anyway, he then checked on him too, and said he was fine. He nail coloring was fine, and he seemed to be really sound asleep, so I repositioned Jude a bit, and then forced myself back to sleep.
Jude now officially has all his therapy equipment in HIS room, I feel like I have control over my house again. Before, I felt like our life was taken over by medical equipment, and situations that arose. I know that when you have a special needs child this will be the case, but you still have to maintain some sort of normalcy in your life. I stand back, and I look at some of the parents who have medically fragile children, and everything just takes over lives. I know it's taken over mine, and in many instances Jude isn't as fragile as some others I know. It's balancing act, and I really feel deep in my heart you have to have a private connection with your husband, and you have to maintain some family time, or it just isn't going to work. It's hard finding that balance, but it's there, and we are getting our hands on it. So how do you balance your life?
Jude's nurse let me know that Jude has a lot of newborn tendencies, but explained this is the least of our problems. She told us that Jude likes to find our eyes when eating and focus in on us, which is surprising since he is visually impaired. Although, we don't know the extend of his impairment. She is very nice, and is giving Mike lots of tips regarding feeding, therapy, and more. Jude also seems to really like her, and even gets a bit upset when she leaves during the day.
Tuesday, March 2, 2010
Jude got very upset when the camera crew was there, and they got a great shot of him in his fit of glory. He was just tired tho, and he fell asleep on my shoulder after he was done crying. Mike said it's because I did not negotiate his contract, and give him more money to be on TV, haha! Mike is always the jokester. Joking or not, Jude does have his tantrums, but the nurse seems to think those are good. She said it means Jude is resistant to doing things he doesn't want to do, and she explained she has nursed many kids that cannot express that emotion at all. Jude is also getting even more frustrated with not being able to move, or get up. You can see him twisting his body while moaning trying to make it work. I am unsure if his mind is telling him he wants to get up, but I believe it is. Yesterday in therapy Mike said they held Jude up on his hands, and he actually brought his knees forward and lurched like he wanted to crawl. Although, Mike felt Jude's muscle quivering down the middle portion of his body, and Jude would collapse. It seems like the low to no tone is in his middle, and neck, which was key parts to making everything work. Last night Jude got pretty frustrated in his bed, because he was trying to turn and adjust his body. Mike started getting teary, and made a comment that despite the good work Em, and I do it doesn't make it easier that Jude cannot move. I explained that's not why we do it, but I knew what he meant, and it touched my heart.
The nurse told Mike yesterday that she is going to have to find a place where she can get more hours. We are hoping it's another part time job, becaue we really want to keep her.
Jude is still eating well, but eventually we are going to have to face the fact that Jude is not eating enough solids. The nurse recognizes he is very thin, but she also understands why we have not gotten the G button. She agreed that in some circumstances the button decreases the child's drive to learn to eat on their own. So for right now Jude is still G button free, but it looms around the corner. I was able to get some chicken with fruit down Jude Sunday ........ prior to our dog Bigs knocking it off the table, and eating it. He was in so much trouble that he hid in time out in Emily's room. Jude's seizures have GREATLY increased in my opinion, and it almost seems like he is in some constant seizure state to me. Even when he is sitting still his eyes are fluttering, or his mouth is opening and closing. He has another neurologist appointment in March, so we will know more then.
Monday, March 1, 2010
Friday night Mike, and I just hung out at home, and then Saturday we got up with some plans to go shop for the kids. It was my birthday, and I wanted to just spend the day picking up some items they needed, and spending it with Mike. Before we went I was relaxing on the couch with Jude watching TV, and suddenly my heart started fluttering rapidly, and my chest hurt again. It scared me to death! I started crying to Mike that I didn't want to die, and he just hugged me. I thought about staying home, but I decided to get out, and see how I did. My chest hurt throughout the day, but it seemed very light. This morning I was in a great mood, and very relaxed so I went to take my blood pressure and it was 136/90, DARNIT! It just makes me so mad!! I am dreading the cardiologist on Friday, and praying it's something simple. Honestly, my gut is telling me it's more serious than I think, and I think that's why I am so frustrated. I believe in seeing the positive, but this is aggravating me. Plus there is no telling what caused it....the difficult pregnancy, the black widow bite, something hereditary, Yaz, stress......who knows.
So Jude was good all weekend, and seemed pretty relaxed. I did give him a bath yesterday, and he got very upset with me, but other than that he seemed to be doing well. I have noticed his legs are turning in some from lack of standing on them, so I am hoping we can get him comfortable with his stander.
Em has an interview today with Channel 11 so last night we moved all of Jude's therapy equipment up to his room. We were planning to do that anyway, this just got us motivated. Honestly, Mike moved most of the equipment, while I did chores downstairs. He also moved Jude's crib into our room, and Jude seemed very very happy to be back in his bed again.
Plus, we now have his crib toys hanging up so he can play with them if he wakes up. This is a lot less stressful on me. Jude makes a lot of noises while he sleeps so the baby monitor does not suffice. He has been in our room since he got so sick again, and I am happy his crib is near us.
So for my birthday Mike took pictures of the kids for me, which was very cute. Mike has always been a photographer, and even flew to Spain to film the running of the Bulls. With what happened to Jude his creativity has been stifled, and he put his passion on the back burner. He has now gotten back into his love of pictures, and plans to do this on the side for supplemental income. As you can see he is amazing. He took these pictures in 5 minutes before Jude freaked out.
So I got some boxes ready last night for Em, and her friend to fill today for her interview. These is just a glimpse into my living room.