Monday, May 30, 2011

A bloody mouth and humbled thoughts

We have had a long holiday weekend which is nice. Saturday night we went to dinner with my family that were in town from Missouri. Prior to going to the dinner Jude started throwing up, which was not pleasant. While throwing up her started spitting blood out of his mouth. Nurse Allen looked really scared so I stepped in and pointed out the blood was bright red which isn't normally a big concern. I grabbed a cloth diaper and stuck a portion of it in Jude's mouth holding pressure on his tongue, gums, etc. I finally found the culprit was two molars being cut on the upper left side of his mouth. Poor Jude was in pain and that was what was causing him to throw up. Again the darn pheno Jude used to take caused his gums to harden and his teething is so much worse than Emily's ever was. So we go see the Keto doctor on 6/20 and I am anxious to hear what they have to say.

It's Memorial day and I am thinking about my grandfathers who served in the war that have passed. I miss them both and I am thankful for their service. I also started talking to Mike about my mom last night. I don't talk about her much on my blog because I don't want to hurt anyone in my family on either side, but last night as we were watching Extreme Home Makeover I thought about her. The family on the show had lost a teenage daughter. My mom was 28 when she passed. I looked at Mike and said .... "Can you imagine....I mean what if something happened to me...packing my clothes up, going through all my personal items...I mean think about it. You would have to go through my purse my closest possession and what do you do with my drivers license?" He replied "I just couldn't do it Jenn.....surely your dad had help when that happened". You don't really think about those things when someone is alive, but imagine how difficult that must be. I don't know it just left me rather speechless last night and humbled.

Thursday, May 26, 2011

Thankful for our nurses

Jude still gets up some at night, but not as much as he used to. We also still have his monitor turned up high while we are sleeping, or trying to sleep. We have the monitor on in case he chokes or seizes in the middle of the night. Charlotte gets here early in the morning and when she does I give her an update of our night with Jude. If something signifigant happens then I write it down in a spiral notebook we both share to relay information.  Once I give Charlotte my update I go lay down for about 15-20 minutes......it sounds so strange, but it has become my me time. For that amount of time I turn off the monitor, I close the blinds, I turn off all lights, and I just.....be. I don't ever go back to sleep but I just breathe. I don't have anyone asking me for food, any deadlines to meet, or anyone upset. Charlotte must think I am really lazy or crazy..lol. Although these simple minutes in the morning have helped revive my emotional well being. I am now beginning to eat very healthy in the morning, walk at night, and just remember to live. It's amazing what twenty minutes can do and it's all thanks to one amazing nurse.

There is so much I could say about Charlotte and Alan but it's probably been said before. I am just thankful we have people that put up with our messy house, our hectic schedules, and love our son.

Just to darn busy

Funny story from this morning. So I always pack Emily's lunch for school and Mike's lunch for work every night. I place them in the fridge so they can pick them up on their way out in the morning. Well Mike didn't need a lunch yesterday and therefore his lunch box wasn't on the kitchen island last night. Guess who forgot to pack his lunch? I heard him open the fridge door about 6am this morning and I said "UH OH" really loud.

Mike: (sticking out his bottom lip) you forgot to make my lunch
Me: I know I am sorry! I have really been over busy lately and just forgot
Mike: but you forgot to make my lunch
Me: Yes I know.........
Mike: but I only have $5...
Me: hands him $3...only cash in my wallet
Mike: What is this going to buy me?
Me: something?
Mike: You would think you only have ONE kid
Me: Laughing

Mike leaves and I get a text " I still love you even though you hate my stomach"


Wednesday, May 25, 2011

therapy and tornado's

Well getting through to me at work today should be a chore. We have been inundated with claims and more due to the storms. At least it makes for a busy day.

So last night I raced home because I knew bad weather was imminent. As stated before I am not a fan of bad weather. I am fascinated by it so it's rather a love hate type relationship. I am not one to live in fear but I am respectful of mother nature because I have seen the destruction tornado's can cause. Once I got home we started watching the TV and tracking the weather. Suddenly my text messages started going off stating "tornado heading for you". So we started clearing out the bathroom and discussing whether we should leave for the tornado shelter nearby (a friends cellar). When we finally decided to leave it was to late. Hail start pummeling our car so we turned around and went back home. Suddenly the tornado sirens activated, it got really quiet (never a good sign), and then it all hit. Once we heard the sirens deactivate we emerged from the house to survey the sky. We could hear the weather station inside focusing their coverage on areas past ours so we thought we were safe. Suddenly I saw the clouds began to rotate and I pointed them out to Mike. He ran to get his camera (of course) and when his battery was dead he grabbed my camera as I shot pictures from my cell phone. I snapped a quick photo and then rushed to the bathroom to hide with Emily, but luckily the funnel never touched down.




So we were all luckily all spared and we didn't suffer any major damage.

I went to Jude's therapy today at Our House. They started with the Vital Stem which is placed on his throat. It gives off small electrical impulses to help him learn to swallow. Well he got very very upset today. He was so upset that he threw up twice. I grabbed a towel and caught everything in a timely manner. Poor guy! He just got so upset that he made himself sick. The rest of the therapy seemed to go this way until I had to leave. I am hoping PT had better luck and I will find that out tonight.

So remember the customer who came in and told me I needed to pray more for Jude? Well without going into specifics someone else came in telling my co-worker that it was actually the fault of my ancestors, that someone must have done something wrong and I had been cursed for it. Really people? really? sigh! Good thing I was at lunch because I sure don't think Jude is a curse.


Monday, May 23, 2011

Kentucky, planes, and a bumble bee

Our weekend was a whirlwind, but we had a pretty good time. Thursday night Emily and I departed from DFW airport. We sat at gate D16 for awhile until we suddenly realized they changed our gate to C14 which required us to sprint across the airport to the sky tram, said tram ended up being Emily's favorite thing ever. Once we arrived at the gate Emily immediately found a pageant friend that was on the same flight. Her little friend won one of the biggest titles awarded this past weekend.






Our flight was delayed due to some "maintenance issues" which scared me since I hate to fly. Luckily we had a great captain who assured us it was just a light bulb. Emily and I flew stand by and we got to sit in first class. She was impressed with the cookies she got. Once we landed in Kentucky we had to catch a shuttle to the hotel. By the time we got to bed it was about 2am, but luckily we got to sleep in the next morning. Our friend Gina that gets us the plane passes brought her daughter to watch Emily compete. We had a GREAT time together!!!

Emily and Gina participated in Karaoke night at the hotel....oh yes they did! They sang Journey's "Don't Stop Believing".



On Friday night Emily participated in interview. She seemed a little out of sorts, just not herself. I figured she was just nervous and I just tried to calm her down.



Sophia seemed to have a great time! She talked Gina into buying her a pink pony that a vendor had for sale in front of the ballroom. The pink pony went everywhere with us that weekend. He even got a salad at dinner with us, courtesy of the plants in the restaurant.....doh!




Overall Emily did well, but I could tell she was just not herself. She looked amazing in beauty, which is where they wear their ball gowns, but the rest of the time she looked off. She finally admitted she didn't feel well (the mono) but was afraid to tell me because she wanted to come so bad. She is right, I would have cancelled the trip if she had informed me she was under the weather again. Emily ended up pulling what's called divisional beauty. It wasn't the title she was hoping for, but she still won something. So we had a long talk about how life works and how you cannot always get what you want. She was gracious and congratulated all the winners.

Once we got home Jude was VERY happy to see us. Emily gave him her bumble bee pillow pet that she had won. He hugged it and smiled. Mike said he had been angry the night before and he believes it's because he was wanting his mommy time.


I still haven't gotten Jude's blood results yet. I did put a call into the neuro today to see if they have them. I am waiting on their phone call back.

So overall we had a good time in Kentucky.



















Wednesday, May 18, 2011

Planes and a sleepy baby

I had verbally convinced myself that I wasn't stressed about my plane ride tomorrow with Emily. I am not keen on flying, but I was sucking it up for the weekend for her. Anyway, that's all I dreamed about last night. First I was at the airport without Em, next we were there without the luggage, next I was having a panic attack boarding the plane. I woke up a bit stressed.

Jude slept until noon yesterday......we aren't sure why. Maybe he is growing? Maybe the seizures are to much? He is going for blood work today to check his medication levels. I requested this because they were wanting to increase his seizure medications. I would like to see his levels before we throw more medication on him. In addition I told the neuro my concerns about the failure to hear back from the Keto doctor. He said there are not many neuro's that are doing the Keto diet and this doctor is suppose to be one of the best. I explained that I am growing very frustrated and might try to find a Keto doctor on my own.

I will let everyone know what Jude's blood results are. I fly out tomorrow so I probably won't blog again until Monday. Have a safe weekend everyone!


Monday, May 16, 2011

He said, she said, you said.

Today started off pretty normal but ended with a bunch of drama. I had a customer come in.........a well known wonderful customer that I really like........that decided I needed to pray for Jude. He asked "How is your baby". I reminded him that my baby had a  stroke, but is doing okay and that my older baby was doing much better ... thanks to his prayers. He began to tell me how important it was that I pray daily over Jude for Gods healing. This conversation went on for some time. I felt uncomfortable...........but let me express that I am not resistant to Gods word. I felt a resistance because I believe God accepts Jude for who he is and so do I. I feel like Jude is wonderful just the way he is. To me Jude doesn't need to be "healed" to be normal. My husband says he is a realist and despite prayer he understands that Jude's brain will not heal itself. It's not a lack of faith it's actually the opposite. It's understanding the issues set before us and trusting that the Lords faith and love will guide us through. Trusting the Jude will be well enough to continue his life and that we will have faith enough to guide him through it. I understand my customers motivation for saying what he did, but I guess I see life in a different manner. I thank the Lord for giving me the opportunity for caring for such an amazing and special human being.

On top of that I have had a few people comparing their life to mine tonight and it's really made me angry. That's my personal issue. I need to remember that the people I have talked to may very well be having serious issues. I think about prime pumping Jude's IV feed tonight, bolus pumping his meds, and dealing with several seizures and it makes me jaded. My life isn't harder than anyone else........I just think it is and I quickly checked myself. I shouldn't pity what I do I should praise the strength I have been gifted to deal with an amazing little boy.

A puppy and some seizures

I had a very busy weekend, but a good weekend. Friday night Jude and I had a date night together. I packed him up and we went to my dads house for dinner. He seemed to really enjoy spending time with me. When I put him in the truck to leave I asked him if he had fun with mommy and he smiles the biggest smile.  He had a lot of seizures throughout the weekend, but overall he did well.

Yesterday we went to my cousins house because her oldest daughter is graduating from high school. My aunt brought her new puppy for us to see. It may be the cutest puppy I have ever seen. I carried him around most the day.



Charlotte just called and said Jude is not having a good day. She said he had five seizures before they even left the house for therapy then during therapy he threw several full tantrums. I am getting irritated that I am still not getting answers on the KETO!


Friday, May 13, 2011

School of emotions

I have mixed emotions today which may be hard to explain. We had Jude's meeting with his potential school today. We all got up and ready this morning to take Jude to "his first day at school". The wonderful teacher met us outside to guide us into the school. It was field day and they were concerned about the level of noise so they took us in a back entrance. I was impressed at their level of consideration. They led us back to a room where there were four other therapists/teachers waiting on us. I felt a bit flush as I walked in.....I am not sure why.  I wasn't aware they were going to do an entire assesment on Jude today. There was an occupational therapist, a physical therapist, a speech therapist, and a teacher. They all had their notebooks and all began asking questions. They were sweet to Jude and talked to him very nicely. Then they started asking about his skills......and this always gets us down.

Teacher: Does he roll over
 Me: No, but he did several times before his seizures started a little after three months of age
Teacher: Oh dear, yes that happens
Teacher: Does he grasp objects
Me: No
Teacher: Does he talk
Me: well he makes vowel sounds
Teacher: Does he sit on his own
Me: No

It went on like this for awhile. Charlotte and Mike answered many questions too. Charlotte was wonderful as usual and she made sure they knew Jude had a routine throughout the day. They laid Jude on his tummy and boy he got SO mad. They saw a full on Jude temper tantrum. Once we got him calmed down they put some objects in front of him. They had a Mickey Mouse Mirror that played music and I heard the PT exclaim, "Look he looked RIGHT at it! That's great". Jude then started moving his left arm trying to bat the mirror. Then the PT mentioned how she disagrees with the other therapist and thinks someday Jude will have better neck control. After they finished their assessment he was marked the way we figured. 0-3 months on everything but social behavior which is always higher. We then moved to where Jude's classroom would be.......and I just looked around. I felt tears welling up in my eyes and I swallowed hard to push them back down. I didn't want anyone to see I was upset. I looked at the little place cards on the desks and I realized Jude won't sit at their chairs. They explained how they have the children move their place cards up on their "chart" near the board to know what time of day it is. How will Jude even know what a place card is? It made me wonder if Jude is to special even for the special needs class. They did confirm that Charlotte would be allowed to be with Jude 100% of the time.

I bounced between emotions. One minute I felt like the teachers only have Jude's best interest at heart and the next minute I wondered what they could really do for him. Mike has also been on a tangent that "Jude doesn't want to go to school mommy". He also feels they may not be able to do much and is worried about waking Jude up so early to get him to class by 7:45. I am holding out hope that the Keto diet is going to work for Jude and therefore we can lower his seizure medications. Without the medications I am hoping Jude will be able to do much more than he can now. It was a bit overwhelming this morning.....honestly I still am. 

When we got home Charlotte placed a sleeping Jude in his snug bed. I went over and kissed him. I felt safe again that he was back in his familiar enviroment. I felt a bit teary again. Ashamed of myself that I felt robbed of a normal child while I was at the school. I love my Jude and I am very comfortable with who he is.






Wednesday, May 11, 2011

A really bad seizure

Jude had a very bad seizure tonight. He lost oxygen for awhile and we began to panic. He also had a hold of my hair so I was writhing in pain while Mike was trying to get Jude to breathe. I plan on putting a call into the neuro tomorrow. We were warned that the older he gets the more his seizures could progress.

I am now praying for the Keto doctor to call soon!


Asking Jude

Emily had a band concert last night so I got home a bit later than I normally do. Once we settled in I grabbed Jude and we all sat down to watch our favorite show "Glee" as a family. We all laughed and enjoyed the music on the show and the lessons the show taught last night. During the episode my cell phone went off so I knew I had a text message. If I am holding Jude I will normally ask Emily to retrieve my cell phone from wherever I laid it down. Tonight I looked at Jude and said, "Jude go get mommy's cell phone please". He just looked at me and then looked back at the TV. Em and Mike looked at me a bit perplexed too, but I just repeated myself. Again, Jude looked at me. I said "Let's go get mommy's cell phone together okay?". So I carried him into the kitchen, placed the phone on his chest, then placed his hands over it,  and walked back to sit down on the couch. When I looked down at him he had the biggest grin I have ever seen on his face.

He understood............I just know it. I had asked him to do something versus his sister and he got to do it. I think he felt accomplished.


Tuesday, May 10, 2011

A doctor visit and a missing kid

Charlotte and Jude went to Jude's first big doctor appointment without us in attendance today. Charlotte was able to record the entire visit so I am anxious to see it. They went to visit the pulmonologist for a check up.  The doctor said Jude is doing well, but he did say that he agreed with the first pulmonologist and that Jude will need his tonsils out. Although he also said he wasn't going to press the issue because "in children like Jude" taking their tonsils out can present other issues. There is that ole "children like Jude" statement, but I have grown used to hearing it. I know what they mean and it isn't meant to be hurtful. Friday we have the meeting with Jude's school and I will be available at this appointment. I plan on asking lots of questions. I am also very anxious to see where Jude will be attending school.

So Emily gave us a scare yesterday. She requested to attend band practice after school and was going to ride home with her friend across the street. Well her friend texted me letting me know Emily was not found after band practice and they had to leave the school. I was rather calm at first calling the schools front desk searching for Emily. A teacher checked with another student who confirmed he had not seen her in band practice either. It snowballed from there. No one could locate her, no one saw her leave, and everyone (especially me) was up in arms. Emily had left her phone at home so we couldn't reach her. My dad lives around the corner from her school so I called him requesting he go by her school. I was afraid Emily was waiting outside, but he couldn't find her either. Although he did confirm with her band teacher she had been in class. I felt a little better after hearing she was in class and then suddenly Emily came strolling through the door. She strolled right into me tearing into her for not calling me. It turns out that when she couldn't find her initial ride so she secured another ride. This was resourceful on her part, but I made it VERY clear I expect a phone call if this ever happens again. My exact words were "Gees girl the school almost called 911!".

Speaking of Emily I had to share what she said the other day. Emily and I are leaving next Friday for a pageant in Kentucky. Emily is SO excited for it!! Our friend Gina and her daughter are going with us so it will be one big girls weekend laced with chocolate sundae's! Anyway, they are giving a title based solely off facial beauty that wins $5000. Emily wants this title.......bad. So while riding in my car she said "Mommy if I win the $5000 can I put it in a fund so you can have another baby". I didn't even know what to reply. Mike was in my passenger seat and we both just stammered a bit. I finally got out how thoughtful it was for her to offer to help, but that was a decision Mike and I had to make. I then explained how expensive babies are and how expensive having a baby really is. Anyway, I thought it was sweet, but it caught me off guard.

I just put another call into Jude's neuro about the Keto diet. I am anxious to get started, but I have yet to get the information on the doctor he wants us to see.

Monday, May 9, 2011

Zzzz's and a picture

I went up to Jude's therapy session today. Charlotte and Jude rode transportation and I was able to run over on my lunch break. Charlotte (our nurse) said she was very impressed with the drive today...thank goodness! I was all prepared to watch Jude have his vital stem therapy which helps teach Jude to swallow. Although, this is what I saw.



Yep Jude slept through the entire therapy. Charlotte also said she had a hard time getting him up to take his bath today. He is just a sleepy boy. He grunted a lot last night and had to be repositioned so I am wondering if he needed to catch up on sleep. Charlotte is going to watch him closely to make sure there isn't anything else going on. We did everything we could to wake him up for therapy, but he would have no part of it.

My mothers day went well. We didn't do much at all. I thought I would share on of the photo's of Emily that the wonderfaul Tiarra from Little Faces Photography captured! It's my favorite so far.




Saturday, May 7, 2011

Crazy toes, hush your mouth, and a special day

I was determined to have a relaxing day today. Emily and I got up this morning to go to our friends salon and we got our hair done. After that we headed out to the nail salon. I haven't had a pedicure in forever and I treated Emily to a manicure. Occasions at the nail salon are always reserved for special days in my house. It's money we can use elsewhere. Today I realized that I might have a little extra money to do something special. So when the lady asked me what color I told her ...... "do something funky and whimsy". I came out with pink toes, with black tips, and a cute design on my big toes. From this I learned I had the movie "Black Swan" playing out on my toenails. I think I needed white toes with pink tips........I am to snow white. I also learned........I am not young anymore...lol! I will enjoy my funky toes while they last, but they just aren't me. I decided I am okay with that.

I tried to pick things to do today that would be relaxful for Em and I both. I know she doesn't need to exert a lot of energy. We briefly attended a friends birthday party. Her daughter requested all the gifts be in the form of donations to Emily's Smile Boxes, which is so thoughtful. Although, we quickly headed home so Emily could rest. Although, on our way home tonight my wonderful daughter turned into a something resembling a demon. She was ungrateful, mouthy, and obviously very tired. She requested to go to a friends house, but I refused because I knew she was overly tired. She needed her sleep to heal her body. She threw one heck of a 3 yr old vs 13 yr old fit! Once we got home she stomped off to her loft and began working on a project. I heard her cutting, pasting, taping, and more. Which is fairly funny because Mike says Emily has a tape problem. He also promises that when she marries he will tape the entire inside of her house "just because". Anyway, I figured that Emily was making some rather smart alec signs in regards to my refusal to give into what she wanted. After about 45 minutes I stomped upstairs to find a long paper chain filled with wonderful messages to me. I acted like I didn't see anything and sunk backwards down the stairs in a tail between my legs fashion.

I guess kids will be kids, but I am lucky to be the mom of two wonderful children. Jude cannot speak, but yet he has found a voice to thousands. Emily is so kind hearted that she has touched hundreds of children and adults. She may have her moments, but she makes up for them up in grand fashion.

Friday, May 6, 2011

Mono, smiles, and Moms

A mother is a person who seeing there are only four pieces of pie for five people, promptly announces she never did care for pie. ~Tenneva Jordan




It's mother's day weekend. We don't really have any big plans. I will just see what the weekend brings. I am thankful for the women in my life that provided care and comfort when my mother passed. Thank you for being there for me.

Emily had a field trip with her school yesterday. They toured the giant Dallas Cowboys stadium. She had a great time, but guess where she is today? Yep, bed! Emily fails to remember that her body cannot keep up with what her mind THINKS it can do right now. Her immune system is still so weak. So when she got home from school we went to get some dinner and by the time we got back she was miserable. Her back was hurting so bad. So I made Emily and her friend some smoothies then they decided to put on a face mask and relax.  Then she took some Motrin and went to bed. She is suppose to have some pictures done tonight with Jude near our house.....I am hoping she feels better. This virus has been a nightmare!



So Jude is going through this phase that when he hears mommy he wants mommy to pick him up and talk to him. He will complain until I come over to him........and this is his response





Dear Em and Jude ~ I am honored to be your mother!

Thursday, May 5, 2011

darn seizures

I feel much better today! I took my lunch early and slept a bit today so I could catch up. I had a horrible headache when I woke up so I knew I wasn't moving for a bit. Anyway, it worked like a charm!

Jude is doing well, but last night we had a very sad experience with his seizures. They seem to be picking up in frequency as I mentioned before. Well he normally laughs when the seizure is over, but last night he whimpered and cried out. We felt terrible! I am so anxious to try out the Keto diet and to see if it will help him. I still haven't heard from the doctor this week. I plan on calling them again today. I appreciate the emails I have received from various readers with their experiences. I have heard from several people that said they were placed in the hospital to starty and several that said since their child had a g button and ketocal they were able to start at home. I will be interested to see what they do with Jude.



Wednesday, May 4, 2011

It's a Wednesday update!

As grateful as I am for Mike's new job I am SO tired I feel sick. Jude has been up and down .......and Mike gets up at 5:45 now. Well he isn't the quietest person in the world (all those that know him are now laughing) so therefore Jude wakes up and the dogs. That means I have to get up. Although, I will continue to get up early as long as he has this great job. I think I might get a tread mill and watch the news while walking until it's time to get ready for work.

Jude is doing well. We were having more issues with his transportation to therapy and his doctor's, but I think they finally have his situation ironed out. We will see this next week if they finally get it right. He is still grinding his teeth and his startle seizures have greatly increased. After his seizures he seems to be very irritable so we think they may be causing some pain. We keep the Motrin handy. I am anxious to talk to the doctors about the Keto diet. I am just waiting on a phone call back from the neuro about this. If you would like to read more about it here: http://www.epilepsyfoundation.org/about/treatment/ketogenicdiet/


Tuesday, May 3, 2011

A new job

I have been so busy that I haven't been able to blog. I just wanted to update that Mike started his full time job with the Dallas Cowboys today. I am so happy!!! They have changed our lives. We feel very lucky.

I will update on Jude tomorrow. Have a great day.

Monday, May 2, 2011

The weekend in pictures and video

So this weekend we had some more storms



We made some Smile Boxes for some kids at a therapy center in Dallas


Em got a hold of my camera again........and guess who is home again today. Look at her right arm in this picture.....see the faint purple blotches? Yep all over her again today. It's the mono that WON'T GO AWAY.




and Jude and I found a new game to play....I was in my pj's ..forgive :)


video