Jude still isn't sleeping that great. I turned off his food pump last night about midnight (I think), then turned him about 2, and then he got up about 4. He actually slept fairly well until 4 and then he began to toss and turn a lot and our older dog was on total meltdown due to the storm outside. Mike bundled the dog in his thunder jacket while I went out to the living room and tried to sleep on Jude's futon. I really feel like the lack of sleep is beginning to take a real toll on my physical and mental health. The suggestion of a night nurse was brought up, but I just hate to have someone else in my house. I love Charlotte and Allen is good too, but the nights are our time with Jude. However, with that being said we have made the decision to look into having a night nurse for the first two weeks after Jude's surgery. I doubt we will continue past that point, but we will see. Jude is fever free, but still seems congested. Emily is the same way so whatever this virus is seems to linger for a bit.
I have felt a little out of sorts lately, but I think it's because I am so tired. I would love to go on a vacation with Mike and just spend some alone time with him. I feel like we are always rushing, working, and dealing with illness issues. I also had a conversation with Emily last night about the need to make friends outside of a boyfriend. Emily lacks for nothing, but through our conversation I did realize she is missing out on social activities because of our situation. I know this will change when she is able to drive. I just cannot get her many places after 5pm. Again, she lacks for nothing, but I guess I hadn't realized our life had impacted her. We always strive to keep her involved with others.
I set up an impromptu party with some friends. It's better if we have people to our house so I can watch Jude there. Hopefully people can make it because I think Emily and I are both in need of social time.
We go June 4th for Jude's neurosurgeon consult about the Baclofen pump surgery at the end of the month. I am anxious to see what the doctor says about the procedure.
Well the bad news is Jude had an awful night. When I got home he was pretty congested, wanted to be held, and felt rather warm. He had an axillary temp of 99.4 so I gave him some Motrin and some Benadryl. Eventually Jude fell asleep in my arms and I moved him into his bedroom. About 2:45am I woke up and went to check on Jude and he was burning up. He had a axillary temp of 102.6 ax, but I knew if we took it rectally it would easily be 104. He was just a sick kid. I gave him another round of Motrin and made sure we only left a sheet on him. He woke up a few other times wanting to be turned or comforted.
Emily has been ill so I am pretty sure this is just a viral situation, but of course with Jude we have to watch him carefully. I told Emily that with her I can say "eh a 104 fever is just doing it's job rub some dirt on it!". She said "thanks mom". Actually, I do pay close attention to her sicknesses as well, but her immune system has a better chance of fighting things off. This morning Charlotte said Jude's stats look well and his axillary temp was 97.4 so that's great! She said he is lethargic but happy. So we will continue to evaluate the situation and see how he is doing. We will listen to his lungs to make sure we don't hear any wheezing. If this is viral there isn't much we can do, but wait. However, we will probably take him in later today just to have him checked out.
Mike and I are both beyond exhausted. I forget what day it was that we actually got pretty consecutive sleep. We knew something was going on with Jude, but we weren't sure if it was his legs or sickness. Now we know. So we plan on sleeping a lot this weekend while the nurses are there to catch up.
Jude got up three times last night. It doesn't sound like a lot, but I think it's taking more of a toll on me lately. I guess that's because I am getting older and my body just doesn't work as well. I feel like my bones creak whenever I get out of bed in the morning. I know Jude is uncomfortable and who wouldn't be after being in the same position or hours. I know that this upcoming surgery will help with this issue. I don't like the idea of the pump in his stomach, but I know the constant flow of the pain relieving medication will help Jude. I really believe this will help him sleep better, but we will still need to change his position.
Last night I was scanning over friends pages on Facebook and I saw kids that were Jude's age dressed up for their preschool graduation. They were ready for kindergarten. It's hard to explain my feelings when I see cute pictures like this. I always smile because I am happy for them, but it's a little twinge reminder that that's where Jude should be. Then in a half second I smile because I am still holding Jude in my arms like a baby and he is smiling at me innocently. Sometimes I think Jude is lucky! He will never know any emotional pain or disappointments that we do and he is happy with who he is. He doesn't need the things we think we need so he is perfectly content.
The puppy is doing well but last night I compared her to a whale scooping up fish in the Ocean. She just opens her mouth and walks and whatever gets into her mouth she bites. She will grow out of this and I know she will be great for Jude. It's just the patience of dealing with her right now or watching Mike deal with her. Charlotte said they have already incorporated her into some of the therapies and they have Jude feeling her fur. Although, it did take the puppy all of five seconds to chew off the end of my new Apple charger...insert curse word.
So I have been reading a lot about making myself a better person. I found an amazing article and I am really trying to abide by it. I am trying not to judge or make assumptions because doing that just leads to anger and resentment. I am also working on maintaining a positive space around me. If I maintain positive and deflect the negative then there is nothing but an inviting environment left. I am also working on maintaining good healthy relationships. Sometimes we allow abusive people in and they tear down all that's good within us. Just because you love someone doesn't mean you have to like their behavior and I am truly learning that we teach people how to treat us. I have allowed many people in my life to treat me very poorly and it's time to change that. I have also decided I need to look within myself to see what traits may be unattractive and work on that as well. I know I can be head strong, opinionated, and I am not good at walking away. There are other things as well I need to work on so I am on a sabbatical of change. I am also taking steps to eliminate stress in my life and make my life more simple. It's amazing what Jude has taught me over the years and I really attribute this new found inspiration to him. Simplify, enjoy life, and take in the positive. Jude is a great teacher!
Jude would whine because he was hurting which I assumed was from his legs. His whining would wake up the puppy which would make the puppy cry. The puppy would wake up Emily who would say "SHHHHHHHHHHHHH" to the puppy. Emily would wake up Spot who would jingle his collar which would make the entire process start over again. I considered running out into traffic, but I decided that wouldn't help anything. Finally about 1am I gave Jude some Valium because he seemed to be so uncomfortable. However, the normal immediate effects of the Valium didn't happen. It literally took until about 3am before Jude fell into a deep sleep. Charlotte and I both were wondering if Jude wasn't feeling well earlier in the week. Last night may have been an indication that we were right. However Jude's color is great, he is smiling, and he is not running a fever. I think it may just be the crazy TX weather causing issues and allergies.
So I came home to Jude's schoolwork and I decided to hang it on the fridge.
At the bottom Charlotte put "Painted by Jude during school on 5/14/14. Marching Ants (orange), Umbrella (pink), and cloud (blue). So cute!
The 2014 Emily's Smile Box day featuring the pediatric stroke walk/run has been set for Sunday 9/21. We truly hope you can join us. We do need some help to make sure that this event is a success. We need monetary donations so we can fill 400 Smile Boxes at the event. All donations are tax deductible and the paypal address is emilyssmileboxes@yahoo.com. We also need gift cards, gift baskets, gift certificates, purses, jewelry, toys, etc to put in our balloon pop. Any amount works! We raise money through the balloon pop and need great prizes to give away! If you can help email us at emilyssmileboxes@yahoo.com. Thanks so much!!!
We left Thursday night for San Antonio so Jude would have a full Friday at Sea World and then we could spend Saturday at Morgans Wonderland. On our way to the hotel on Friday we came across a fatality accident right after it happened. The police had the car door open and we witnessed them not attending to a slumped over gentlemen. So Mike and I had to explain to Emily what had happened and later that night they saw the situation on the news. Our thoughts are with his family. It sounds like a very sad start to the vacation and it was, but the next day got better.
Saturday we got up and had breakfast at the hotel. We then made our way to Sea World and they were ready with our passes. We just seemed to be lucky enough that we caught shows right when they were starting. First we saw the Sea Lion show and it was SO impressive. Emily really liked it and I caught her laughing several times even though she was trying to act like an uninterested teen. We then caught the Shamu show with the big whales. Then...........the sky opened up and we thought about building an ark. Rain happens although I was so disappointed in the people attending who kept running over Jude seeking cover rather than helping him. However the employees were awesome and really helped. The rain tappered off so Mike looked at the weather and he saw a very large storm cell making it's way to our area. So we took a chance and went to Dolphin cove to see if they could fit Jude in so he could see the dolphins. We explained that Jude had a "Dolphin Encounter" scheduled later in the day, but that we couldn't risk keeping him at the park during a large storm. The people were SO NICE! They called in one of their experts and they took us to the pool. The Dolphins were so interested in Jude and were truly the most amazing creatures! They were immediately curious popping their head out of the water to see him and meet Jude.
The handlers took time to explain all they could to us and you could tell they really loved the Dolphins. The lady with us had several degrees and said she and the expert that was with us spend most their time at the park. The "alpha" dolphin had been rescued from a fisherman's net at only 7 days old. He said generally when they are that young they won't make it, but they nursed him back to health. He said they have spent many nights "walking" around the pool. I found out what he meant when "Gilley" the alpha "walked" us out of the park by swimming us to the door when we were leaving. Jude would dart his eyes to look at the Dolphins and we got a few smiles. I have a few video's to share.
I was so impressed with Leah and Steve with Sea World. They made a little boys day and our families lifetime. Emily loved every single minute of it! After the Dolphin visit we rushed Jude to the car and made our way to a restaurant and we walked in right when the sky unleashed again. It was perfect timing!!! So then we tried to figure out who to get his wheelchair up their stairs that had no ramp......lol.
On Saturday we made our to Morgans Wonderland. The only accessible theme park in the nation http://www.morganswonderland.com/. I cannot even begin to tell you how amazing this experience was. When we walked through the entrance gate we saw this large sculpture that's dedicated to everyone with special needs.
The first thing we did was ride the Carousel! They rolled Jude into the accessible Dragon space and Mike and I both..............cried under our sunglasses. Jude was on a ride!! The first time around Jude was a bit cautious, but soon he realized this was a great thing.
When the park opened they had lighted stepping stones placed around the park with years on them dated from 2010 - 2096. Each year they pick five people that have done amazing work with special needs. Emily was on their very first stepping stone so we had to stop by and get a photo! The guest director also came out to meet Emily and chat with us. They were just so amazing. I told the director that it may seem trivial, but I was SO impressed they had an adult sized changing station. She said, "you would be surprised how often we get that". I said "You cannot go anywhere......restaurants, the Zoo, theme parks, etc and be able to change Jude". Everything in that park was made for both people without needs and people with them. It was hands down amazing and I highly encourage people to visit and to support this fabulous place.
So one of the reasons Make A With of North TX worked so hard to get the vacation scheduled so quickly is because we were scheduled to pick up the puppy Saturday. If you don't know we are getting a German Shepherd both because my husband has always wanted one and to be a therapy dog for Jude. Saturday night Mike drove out to get the puppy. Once they got back this cute little dog came bouncing through the door and I wasn't sure what we were in store for. However I quickly learned this was a really smart puppy!! By the end of the night she was walking on a leash, going down stairs (while yelping...it was cute), and knew to sit. I couldn't believe it! When we introduced her to Jude I think he was impressed too.
I enjoyed my time with my family and with Jude. We went on our own so I took care of his medications, food, baths, etc. Although I love our nurses it was nice to spend some time with Jude. We are pretty tired, but it was so worth it!
Someone posted this on their Facebook and I was very touched. It's a mothers day letter for a special needs mom. It reads as follows.
"Dear Mom,
Even without my words, you always know what I need.
When I am hurting or afraid, frustrated or weary, you gather me home into the safety of your arms.
You know what makes me smile and fills my face with light.
You make me happy when you sing my favorite song and sweep the softness of my favorite blanket across the curve of my cheek. And when you take me for walks and I feel the warmth of the sun, the cool breeze brushing by my skin.
You ignore the words of others telling you what I cannot do, and then fill the hours of every day telling me what I can.
Every day, you see other kids doing more, yet you celebrate me. Pushing away sadness, you focus on the hope of my future. You let my simple, small steps lead us forward.
Never standing still, always in motion, you move before me. Your planning, protective and positive, prepares me for success -- meeting new people and new everyday challenges.
... and Mom, in case I ever go before I can whisper my words of thanks, or wrap my arms around you, know what I know: That before you someday soothe me into heaven's sleep, with you, I live the fullest life and I see the world through your understanding eyes. With your gentle touch, you fill my life to overflowing with the greatest kind of love." Credit to Suzanne Perryman - Blogger at Specialneedsmom.com
Yep I cried. I do know what makes Jude laugh. I watch his face fill with light when I kiss him, hug him, and say 1-2-threeeeeeeeeeeeeeeeee! Every night I gather Jude up and we snuggle on the couch. He is so big now and I am not small that we have personally created a sunken spot where we sit. I hold him while we watch TV and every so often I give him kisses on his forehead and in return I get a great big smile. He has this perfect innocence about him and pure love that surrounds his every move. I accept Jude's future for what it is and I know his limitations. I don't look at him as "disabled" I just look at him as Jude. He is 100% perfect the way.
Along with our journey Nurse Charlotte is always there. She is Jude's second mom taking him on walks, giving him hugs, and taking great care of him while I work. She is like his momager and deserves to share in this letter.
I had to tell my friend yesterday I wasn't going to make her wedding and I got very emotional. I was more emotional when I was telling her about the pump going into Jude's stomach vs. not being able to attend the wedding. I am upset about both situations, but I guess I didn't realize exactly how emotional I am over this impending surgery. So today when I got to work these lyrics kept floating through my mind. It's always been one of my favorite songs and one I gravitate to.
He's My Son ~ Mark Schultz
I'm down on my knees again tonight I'm hoping this prayer will turn out right See there is a boy that needs Your help I've done all that I can do myself His mother is tired I'm sure You can understand Each night as he sleeps She goes in to hold his hand And she tries not to cry As the tears fill her eyes CHORUS: Can You hear me? Am I getting through tonight? Can You see him? Can You make him feel all right? If You can hear me Let me take his place somehow See, he's not just anyone He's my son Sometimes late at night I watch him sleep I dream of the boy he'd like to be I try to be strong and see him through But God who he needs right now is You Let him grow old Live life without this fear What would I be Living without him here He's so tired and he's scared Let him know that You're there CHORUS Can You hear me? Can You see him? Please don't leave him He's my son He is my son! He may be disabled, but his smiles, his giggles, his smell are all taken in by his momma. I just want this to help him and hopefully not be to painful. On a good note we leave Thursday night for Jude's Mark A Wish trip. We are only spending a weekend since our work time will be taken by his surgery, appointments, etc. We are REALLY looking forward to it and watching Jude react to the Dolphin noises. We will also be coming back with Mike's German Shepherd which he will be training to be Jude's therapy dog.
I read this today and it just touched me. I can related to it and it's just an amazing quote. It was one of those quotes that touches you so much that you can't help but share.
“Forgiveness is not about forgetting. It is about letting go of another person's throat......Forgiveness does not create a relationship. Unless people speak the truth about what they have done and change their mind and behavior, a relationship of trust is not possible. When you forgive someone you certainly release them from judgment, but without true change, no real relationship can be established.........Forgiveness in no way requires that you trust the one you forgive. But should they finally confess and repent, you will discover a miracle in your own heart that allows you to reach out and begin to build between you a bridge of reconciliation.........Forgiveness does not excuse anything.........You may have to declare your forgiveness a hundred times the first day and the second day, but the third day will be less and each day after, until one day you will realize that you have forgiven completely. And then one day you will pray for his wholeness......” ― Wm. Paul Young,
After nurse Allen arrived I went back to bed and caught up on sleep from Jude being awake throughout the week. When the clock struck 9 I just laid in bed and played on my phone for a bit. I enjoyed the peace, quiet, and darkness. I know there are so many special needs moms that don't get help, but I think God knew I need some quiet time to reset. Right after I got up I went in to see Jude and give him big kisses. He was very happy to see me and I explained to Allen that Jude had insisted I hold him again the night before. Jude is acting like he "might" be getting sick, but I think it's all allergies. Regardless he has wanted a lot of mommy time and I have loved every minute.
Mike decided to take off work today and we went to meet some friends at my favorite restaurant Blue Mesa. We sat on the patio and enjoyed some amazing food. I think I drank 4 glasses of tea as I felt the afternoon heating up. We were suppose to go to Mayfest but the line for parking was about two miles long. So we figured we were ingenious and since everyone was going to Mayfest we could make our way to the Zoo and no one would be there.............we were wrong. There were so many people and it was so hot that by the time we made it to the "Texas" area I was faint and dizzy. UGH, I am getting old. I mean really? I hate the cold and I was so excited it was finally Spring so I was pretty disappointed in myself. So we gathered our items and headed back towards the exit. My amazing husband was also VERY done with the day so he held my hand the whole way and then we made our way back to Jude.
Once we got home I made some food and then we sat down for a long while. When it cooled off we sat outside on our patio with Jude in his tomato seat. Jude would smile and mouth cute words so I really think he enjoyed the day. When I brought him inside and got him ready for bed I leaned over and said, "If mommy could stay home with you everyday I promise I would". Jude smiled really big. I have amazing nurses that take care of Jude, but sometimes I miss being his primary person. I changed his diaper, vented his G button, made sure his jammies were on, and gave him all his medicines. As I put him into bed I kissed him gently on the head and he said "Maaaaaaaaaaa" and my heart melted.
