Monday, June 27, 2011

A wedding, a marathon, and a tornado

This weekend was my little cousins wedding. Our adventure started early Friday morning about 3am when our alarms went off. We had decided to drive in the early morning so Jude would still have his sedation medication in his system. It also helped us avoid traffic until we hit Oklahoma City in rush hour, but it wasn't to bad. To our surprise Jude woke up at 5:50am and never really went back into a solid sleep. He was actually really good and didn't complain to much. We got rather adapted to scheduling our stops to start his feeds, give him his medication and change him. Once we got to the hotel we laid down for awhile and tried to get some sleep prior to the rehearsal that night. The rehearsal went well and when my cousin showed her future husband the ring she had bought for him he we all got teary.

The next day we went on an early tour of my uncle's chocolate factory which was amazing. If you haven't tried his really should.

Emily had fun tasting all the chocolate

Then Mike and Emily listened about all the charitable work Shawn Askinosie does. He spoke about how they went to Tanzania to drill a well for fresh water. The town was having to travel several hours just to get fresh water. He has done countless missions regarding educating and feeding people in Africa.

Later that night we all got ready for the wedding. Lawren (my cousin) didn't have bridesmaids. She just wanted the little cousins to be flower girls and it turned out perfect. All the little girls looked beautiful.

and so did Lawren

The wedding was beautiful and her husbands words made me cry like a baby. They were from his heart and you could tell how much he loves her. Later we traveled to the reception location. Just would have NO part of the reception. The noise was loud and he was very upset. Since it was time for his medication we decided to start everything and give him his sedative. This calmed him down, but he still didn't fall asleep. He then had his daily throw up routine, but it ended fairly quickly. It again stressed that our lives are not normal and it's frustrating. We wanted to hang out, but we decided to pack everything up and head back to the hotel. Although we did enjoy the yummy cakes.

My little cousin Faith supplied the cute sheep for the top of the primary cake

About 7am the next morning we got up to eat our breakfast and start to head home. We knew that we would need to get gas for our trip. We decided to drive an hour into Joplin, Missouri and stop there for gas and other items. While we were there we went into town to survey the tornado damage. Why? For several reasons. 1. I am an insurance agent and an adjuster so putting people's lives back together after a catastrophe is my job. 2. I just felt my family needed a reminder on how important life is regardless of our situation. It worked! We drove around a bit before until I saw a little black car turning up a small road and I told Mike to follow it. As we came down a hill our mouths hit the ground. The devestation was more than any words could ever describe. We were all pretty quiet until we passed a make shift memorial on a house slab. There was a Mother Mary statue with lit candles and flowers all around it....I started to cry. Then Emily asked what the numbers on the houses meant and Mike was honest with her "They are body counts Emily". We passed a house that had "0" and "clear" written on the front door and under it someone had spray painted "We'll be alright". Other make shift signs would appear that said "rebuild Joplin" and even some with humor "Joplins first outdoor skating park" stood within the rubble. It was a humbling experience. I talked with a lady from FEMA and let her know I worked for Nationwide. She talked freely to me and said 98% of everyone killed was in their home and the need for storm shelters. It is widely known I am a freak about weather and I really want a shelter, but I just cannot afford it right now. The tornado was the deadliest in US history since 1947. Anyway, we left there in silence and I think we all said a few prayers for those that were affected. We then remembered we have a whole lot to be thankful for.

This is not a mobile home.....this was a house. The trees were all stripped away.

This was a shopping center. There are cars entangled in it.

This was a make shift place they were bringing cars, boats, semi's, and buildings.

Tuesday, June 21, 2011

Mommy time

I came home to Jude sitting on the couch last night and I thought it was SO cute. Charlotte said she "gave him the remote".  He was so happy to hear my voice and gave me big smiles for hours. We played together, giggled together and just hung out. He had a lot of mommy time last night and I think he enjoyed it. He knows how to make me smile!

We went to the KETO doctor yesterday and after a three hour visit I came out very confused. I will go over everything in a blog tomorrow. We have a big decision to make on if we are going to move forward.

Saturday, June 18, 2011

Many needed realizations.

I have had a rough time lately. It's not related to a particular cause it's just because...I needed some time to be sad and stressed out. Hence the reason I said I needed some time to focus on myself rather than my blog.  I thought I would sit down and write tonight about my true feelings, but I am at a loss as to where to start in the explanation. I feel like my life resembles a 5000 piece jig saw puzzle.... once I get it mastered I plan on framing my masterpiece.

Let's go down the line of the things that I have been struggling with because I have had many. I try to be a good person so I think that my blog might resemble someone that has an angel and a devil sitting on their shoulders. First, I am so very happy that I have a beautiful house to live in with my family. More thankful than I could ever put into words, yet I am resentful that I am the one that has worked so hard to keep us in this house. I am thankful that I have a little boy that smiles at me with every muscle in his little mouth, but I am resentful that other 3 year olds crawl into their mom's lap and say "Mommy I love you". I am resentful that people chase their toddlers around spanking them because they aren't "behaving".  If Jude could throw crackers across a room I think I would fall down crying in thanks. I am resentful towards some mothers that have no clue what a gender sonogram gone wrong means. Yet on the other hand I am so thankful that my friends daughter that's pregnant will most likely have a very easy pregnancy and delivery. She is a very special girl and deserves the best pregnancy possible.  

I resent people that say " well what did you do wrong" when they learned Jude had a stroke. For the very first time in my life I probably sound very hopefully lost, yet I for the first time really... feel.  I am ANGRY this happened to my family, but accepting of it. The other night when I thought we may lose Jude played out like a movie in front of my eyes. I could not imagine coming home at night from work and not hearing Jude call out in his own manner for "mom". I could not imagine him not being there wanting me to hold him. So the reality sunk in that someday either Jude or myself won't be there. It's humbling. It made me break....some thought it was Mike starting a job but it was the thought of losing my son that caused me to break.  The day you heard your child has a possible lethal blood infection makes you question mortality.  

I struggle with the fact that our life is not how we planned it. Trust me when I say that this isn't a pity party...because  from age 7 my life has been altered. We all have our own stories. Yet everything that has happened in my life has been with reasoning. So I am trying to find a way to balance the life we wanted with the life we were given. Mike and I always wanted to travel, but we realized that's not really going to happen for awhile. One of the things that has sent me over the edge lately is thinking about traveling to my cousins much anticipated wedding with Jude. It's about 7 hours away from home. If we do we keep Jude upright? It might be an easy solution, but I have yet to find anyone that can explain any 5 point harness and it's neck control. If we drive Jude must be sedated due to the 7 hours drive...because he cannot even handle 1 hour. This also means IV feeds while we drive and having a suction machine on hand for his congestion. I don't mind, but it still becomes frustrating. Also trust me that we know HOW to travel with him, but it's exhausting. Not because Jude is a hassle, but because it shouldn't be this hard to travel with someone disabled....doesn't he deserve some simplicity? I really don't like leaving our house with Jude...because our house is our safe haven. Although like I said I so want to's my baby cousin and I love her. I have been looking forward to this for a long time. I cannot WAIT to see how beautiful she is. I cannot wait to see her big day.

I am also struggling because I need more help than people can provide, at no fault of their own. I need help with Emily both emotionally and physically. I have such great support from people around me, I really do. It's hard to explain. I am very angry with people that I shouldn't be angry with. I told someone the other day "I feel so lucky because my amazing family helped me get a week a way". She said "What did you think about that week... be honest". I said "my children". She just smiled like she knew that would be my answer. She then said you have one amazing family,  and without them you would be more lost....but it's a week it's understandable that you still feel a need to get away sometimes. You are lucky that you have such a great support system" I agreed with her because I am so lucky, without my family I would be lost. I sometimes still feel so stressed and I hope they understand that.

Throughout the challenges we have faced I am thankful for the support my family and friends have given me financially. I didn't want to ask for money so many of my amazing long time friends stepped up and bought Scentsy or hosted a party without me saying "please do this for me". Many people are now stepping up to help me create Regal Princess a pageant focused on facial beauty, inner beauty, and personality. Something that will help promote community service. Something that is very important to me. I love my job...I am thankful for my job but if "I ever leave this world alive" (flogging molly) I want to know I made a difference.

So it's a little weird in my life right now. I am questioning relationships I had with people that called themselves my friends. I am also finding ways to cut those off that didn't withstand the hard times without question.  I am finding that things like a 20 yr reunion don't really mean much. I am admiring well...greatly admiring people that foster parent even tho I was a bit reserved at first regarding the subject. I found a best friend during this situation that I didn't expect to that makes me laugh everyday of my life (thankfully).  I have had a couple of old friends step up and wrap their arms around me and I love them dearly for it.  I have had family call me everyday just to say...hey.  Without my family I would really be lost. I am realizing it's okay to have a complete and total meltdown when you know your child has a serious medical situation. I have realized that's it's not be okay.

Monday we see the Keto doctor and I believe that Jude will have more awareness. I want Jude to hold his head up...I want him to say my name, but I loved just holding him tonight. One thing I have is that Jude is always my baby and he loves it.

I thought this song that's listed on my site was fitting for today's blog.

"In times like these

In times like those

What will be will be

And so it goes

And it always goes on and on...

On and on it goes"

And there has always been laughing, crying, birth, and dying

Boys and girls with hearts that take and give and break

And heal and grow and recreate and raise and nurture

But then hurt from time to time like these

And times like those

And what will be will be

And so it goes

And there will always be stop and go and fast and slow

Action,Reaction, sticks and stones and broken bones

Those for peace and those for war

And god bless these ones, not those ones

But these ones made times like these

And times like those

What will be will be

And so it goes

And it always goes on and on...

On and on it goes

But somehow I know it won't be the same

Somehow I know it will never be the same. "

Tuesday, June 14, 2011

A very scary night

Well I am back and with one doozy of a story. Last week I had mentioned that I was sick. I actually ended up in the urgent care on Thursday afternoon because I felt like I was breathing through a straw. It turns out I had a bad case of Bronchitis so it was easily fixable. The bad thing is Jude got it and with Jude things are never simple. Jude can go from simply fighting a cold to very sick in a matter of hours. Friday afternoon he would cry with the nurse for no reason, which was our first indication that something was wrong. By Saturday Jude wasn't smiling, but didn't seem to lethargic. By Sunday he had labored breathing at night and we knew he needed to go see a doctor on Monday.  We weren't able to fit him into the doctor so we came up with a plan and here is how our Monday played out.

We decided to take him up to an ER near our house after work. If we drove him to Cooks it would take hours trying to get there in rush hour traffic. Jude would be miserable by the time we got there. I figured the local ER could take an Xray of his lungs to see if he had any developing pneumonia. If he did have an infection they could prescribe an antibiotic and send us on our way. BAD move on our part on going to the local ER. They were WONDERFUL, but we should have gone to a speciality center. So they evaluated Jude and decided to give him an IV of fluid. Jude began to perk up some and the doctor explained that his labored breathing can make him lose fluids so he was a bit dehydrated. They then did the chest X ray and they wanted to check his blood. After awhile Mike took Emily to go get some food while I stayed back to watch Jude. That's when the doctor came in with his news. He said that the X ray showed something developing on the left lung. He said he wouldn't call it raging pneumonia but it was concerning. He then started talking about acid in the blood and said he was hanging a bag of antibiotics and we were being transported to Cooks........what ? wait? That's not the plan! So I talked with the nurse and explained that if this is a simple lung infection we would prefer to take Jude home and see his doctor in the morning. He had fluids and antibiotics and I was convinced he would be alright. She went and retrieved the doctor who said " I don't think you understand how serious this is. Jude has high levels of acid in his blood on two different tests which indicate a possible life threatening blood infection. Since there are two tests confirming this I believe that's the issue and so does the doctor at Cooks". I just sat there with my mouth open and excused myself to call Mike. I delivered the news to him and then text all my friends and family to pray. We waited on our transport and we were all eerily calm and quiet. Mike and I both knew that if Jude really had a blood was highly likely it would be fatal. I rode in the Ambulance with Jude while Mike and Emily followed in the truck.

Once we got to Cook's we waited and waited and waited. I finally got very irritated and called a nurse into our ER room. I asked "if this is life threatening then why are we waiting". The nurse was wonderful and said he would get someone on the case right away. I looked at Mike and said, "I pray this is all a mistake and we can take him home". Soon the doctor came in and examined Jude. She said she did see Jude's white blood cell count is a bit elevated, but she isn't worried about the acid like the other doctor. She said she wanted to re-test because she believes the test could have been contaminated because the blood must be free flowing blood from the IV. We confirmed that the ER had a difficult time getting his blood out of the IV. So she re-tested and THANK THE LORD it was normal!!! So she confirmed Jude probably had the beginnings of pneumonia and wrote us a prescription and sent us on our way. When she confirmed it was a mistake Mike just grabbed me and hugged me tight. He said "we were coming back to the same place where they told us he wouldn't make it past five". I told him I thought the same thing. We were both very relieved.

So after a round of antibiotics via IV and fluids I looked at Jude and he cracked a smile. I felt so much better. At 1am I was eating some spaghetti because I was starving and then fell into bed. Jude came home with Bugs Bunny scrubs and went sound asleep in them in his cozy bed.

Thursday, June 9, 2011

A break

I am going to take a couple of weeks off from blogging. I am just not in a good place right now with negative people around me and other situations. So rather than upsetting people and dealing with the unwanted stress of an arguement I have decided to take a few weeks to simmer down. I am going to spend time with my family, re-evaluate my life, and figure out who and what is important. I feel like a lot of people will just truly never know what life is about and I just need to distance myself from that. They say the most stupid things and I need to personally realize that I cannot expect everyone to be "up to my expectations".  I cannot expect someone to react the way I would to a situation, that's just not fair.  Something I have been preaching to someone else, but not listening to my own statements. 

Vague posts like this one normally aggravate me when they are posted from others, but I felt like I needed to provide an explanation for my upcoming absence. So let's just call it a journey of self exploration and a discovery of true friendship.

I will leave you with a funny statement from Mike. Last night I was in tears explaining how I was feeling to Mike, he smiled and hugged me saying

Mike "Aw wet tears......honey you are no longer Snow White anymore you are just crazy."
I said "Crazy??"
Mike "Yes but in a good way. You are just overwhelmed and tired of it all and that's understandable so for once you aren't just being over nice you are saying I need a break... and that's okay."

Gotta love him. I will be back soon.

Wednesday, June 8, 2011

Not a happy camper

Jude had a hard night last night. It was like he floated between good dreams and nightmares. One minute we would heard him giggling through his monitor and the next minute he would be seizing, or crying. Then at therapy today when they put the vital stem on Jude he got upset, but there were no tears. So I looked at him and said "Juders this is how mommy has felt for the last three days. If I could sit at my desk at work and do this I would have". Mike laughed. Watch this video and you will understand.

Tuesday, June 7, 2011

A conference call and doctor visits

Today I had an ARD conference call with Jude's pending elementary school. All the teachers and therapists were present. We discussed the goals they have for Jude which are as follows.

1. Work on exploring the classroom with his teachers
2. Reach and grasp an object
3. Hold head up erect while sitting with teacher assistance
4. Hold head up on tummy
5. To express an interest in learning and they will start with him on a regular schedule. Each morning they will show him a tactile schedule and the object that corresponds to the event like "a ball"
6. Looking or moving his head towards an object he prefers
7. Imitate both vowel and consonant sounds with his teacher
8. Participate in social games like peek a boo
9. Use more switch activated toys

They also said that due to his vision they will use auditory explanations first like touching his diaper and telling him they are going to change his diaper. They plan on putting Jude on a "restrictive" schedule to start. They will take him direct from his bus to the PPCD room where it's calm and quiet. Jude will not participate in assemblies, scheduled events, or worked into the of yet. This is due to his startle seizures and something we requested. We decided to keep Jude at Baylor our house therapy twice a week and send him to school three times a week. His nurse will be allowed to not only attend the class with Jude, but to ride the bus too. They want her there for liability reasons in case Jude seizes and chokes.

Jude also visited his neurologist and his GI doctor today. Both said that Jude looks to be in the best condition they have seen him and they are both encouraged. The GI doctor was very excited to hear about us exploring the KETO diet and said the doctor we were referred to is "the best". He said her wait list is 6 months so someone must have pulled some strings, thank you Dr Riela and Donny! We still don't know if Jude will have to go inpatient to start the diet. If he does we will no doubt have to wait until the Thanksgiving holiday break. I cannot take anymore time off work, other than what I have already scheduled. Mike cannot take off from his new job either and it's a 5 day inpatient treatment. So we shall see.

So was that enough to grasp today? I am still sick and it is so very busy at work today. I am hoping to beat this bug soon. Charlotte seems to think that the strep case I contracted several months ago has greatly weakened my immune system. She said strep is known for doing that. The added stress at work has not helped any, but I am grateful to have a job. Wish I could finagle another weeks vacation after my 11 year stint with the agency. He normally recognizes those things so maybe he will give that to me someday.

My little cousins wedding is in a couple of weeks. I am looking forward to spending some time with my family. Now I just have to decide if I am going to board Bigs or take him with me.

Ps ~ I don't care who you are or how much you have accepted your child's disabilities, it's still hard to hear someone say on a repetative basis your child is "mentally retarded". They kept saying this in our ARD meeting. I know it's their legal term, but still. She said he was being labeled mentally retarded with multiple disablities and scored below average on every test given. Sigh.......let's just say they didn't make my day.

Monday, June 6, 2011

camp, seizures, and stress

Last week was rough. We had an audit at my office which initially didn't go well. It had me so stressed out that I am now sick today. We ended up passing the audit so I think I am leaving early to get some rest. We also had a lot of customer service situations that demanded a lot of attention and work. It was just an overwhelming week.

Jude's seizures have picked up but we don't really know why. He goes to see the neurologist tomorrow so we will know more then. I am so looking forward to meeting the KETO doctor on 6/20 and seeing what she says. I am anxious to know if she thinks this diet will benefit Jude and his type of seizures. I just wonder how he will be without all the seizure medication.

So Emily and I were supposed to go to to Arkansas this past weekend to attend a pageant/dance camp where the campers were going to put together Emily's Smile Boxes. Honestly, I just didn't have the money to go there, stay, food, etc and make my cousins wedding in three weeks. So our wonderful friends running the camp stepped up and offered to take her with them. They drove in a motor home so Em said she watched "Real Housewive" all the way to Arkansas and thought that was fun. She then slept in a king size bed with our friends where I hear she was pretty restless. So bless their hearts for taking her. Emily said she made new friends and just had a great time. This was the first time she had to head up a Smile Box event without me, but it seems it went just fine. The boxes will be delivered to the Children's hospital in Little Rock.  Here is a picture of her giving a speech on her Smile boxes.

and here are the campers making boxes

and this is our friend Cristina giving Em her certificate of completion for camp

Thursday, June 2, 2011

a little update or two

Today marked Emily's last day of school. They are suppose to go tomorrow until 11am, but Emily requested to take her finals early. She is attending an event this weekend where they will be putting together Emily's Smile Boxes. I have kept her grounded from everything else, but since is helping her charity I let her go. She is actually going without me to another state........I am nervous but I know she will be well taken care of. She has a busy summer ahead of her including her first overnight camp in July. I wanted her to attend a camp with her cousin, but the financial portion didn't work out with the dates and Em got in trouble. I am hoping they can swim a lot together this year (hint Sarah) lol!

Jude is doing well but is starting to vomit on a daily basis again, we aren't sure why. We did just increase his medication level so this could be a reaction. Today I finalized a date for Jude to see a new eye doctor to complete some information needed by his future school. We still have not made a final decision on the schooling. I am open to it if he can attend the afternoon class, but I am not sure he can. I also have the KETO dr appointment scheduled for June 20th and I finalized our plans for my cousins wedding today. I also got a lot of work done at my place of business so it's been a successful day. 

I am still praying that the keto diet will work for Jude. The new physical therapist believes that Jude does have the muscle control to hold his head up, but the seizure medication is keeping that from happening. This was more positive news for me since the prior therapist really didn't think Jude had the capability of ever holding his head up. It's amazing the differing opinions inside the medical world. Let me state that the therapist wasn't being mean, she was just giving me her honest opinion based on prior cases. I just have to say that I so admire my husband still scheduling transportation and more for Jude while he has started his new job, thanks hun!

I apologize I have not been blogging as much. I have been dealing with an audit at work that didn't go so well and my over complicated busy schedule that doesn't seem to let up.  I hope everyone has a good weekend!

Wednesday, June 1, 2011

Giggles in the morning

This is what I heard over the baby moniter this morning so I had to go check Jude out and see what was so funny. He was in a half asleep state and I guess he was having a great dream. So I started making kissy noises to him and then he really started giggling. It was a great way to start the day.