Friday, July 30, 2010

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

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

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

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

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


Blood results

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

Blood test

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

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

Basically the test Jude had yesterday was this:

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

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

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

Thursday, July 29, 2010

wait and see, and mass confusion

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

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

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

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

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

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

Booking Jude's birthday

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

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

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

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

Wednesday, July 28, 2010

Teething sucks

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

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

Monday, July 26, 2010

Pageants, soccer moms, and neck control

video


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

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

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

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

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

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

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

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

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

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

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

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

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

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



Friday, July 23, 2010

Jude, and Em

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


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




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

Wednesday, July 21, 2010

trying to crawl

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

video

Tuesday, July 20, 2010

BIG NEWS

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

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

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

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

I will post a video of the crawling tomorrow.

Monday, July 19, 2010

A wedding, and a girls night

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

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

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

Sunday, July 18, 2010

Enough said.

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

Friday, July 16, 2010

A quick update

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

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

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

Tuesday, July 13, 2010

An epiphany

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

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

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

a good laugh

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

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

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


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

Monday, July 12, 2010

Video's and updates

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


video

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

video

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

Sunday, July 11, 2010

Weekend with Jude.

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

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

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

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

Friday, July 9, 2010

bruising and the doctor

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

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

Thursday, July 8, 2010

Jude

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

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

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

Wednesday, July 7, 2010

Update

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

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

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

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

Tuesday, July 6, 2010

well $@#% !

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

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

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

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

Monday, July 5, 2010

Hooray for a mini vacay

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

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

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

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


Saturday, July 3, 2010

A mini update

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

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

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

Friday, July 2, 2010

Doctors

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

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

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

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

Thursday, July 1, 2010

Trying so hard

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




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

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