Today we had a birthday party to go to for little Sofia who was turning four. On our way to her house we stopped off to get some Emily's Smile Box supplies for our friends granddaughter that was in the car wreck I mentioned in my prior blog. While we were choosing items Emily brought me some glow in the dark stick on stars and asked me to buy them separate from her charity supplies. I complied and didn't ask any questions. Once we got home Emily took off to Jude's room and I didn't say a word. I knew what she was doing and I didn't want to spoil the positive energy. I heard the chair scooting across his room and Emily worked diligently for about an hour. Soon Emily reappeared and asked me to come look at Jude's ceiling and it looked like this.
Now his room it sprinkled with glow in the dark stars. The cutest part was she went up to Jude in her high pitched "Jude" voice and told him all about her gift to him. It was a good start to the New Year and a reminder that we should give of ourselves without question. It warmed my heart.
Jude seemed to really like her stars. He stared at them as we laid him down tonight.
Today has been an emotional day. I am not sure if my emotion was caused by actual events, sleep deprivation, or stress. I am assuming it's from actual events. My wonderful great friend Jen is now on maternity leave at work. She had a bouncing beautiful 9lb 3 oz baby girl on Friday. She is healthy in every way and I am so thankful for her easy delivery.
With that being said work has been a beast. I expected it to be of such since I knew I would be picking up her shift with the help of her mom and our fill in Blake. I have done this before..........although I quickly realized I covered two jobs.........when I was much younger (insert laughs). So on Tuesday our amazing part time person Susie (who happens to be Jen's mom) let out a sigh at about 3pm and said, "I think I am fading". What a great response to a stressful situation. Work is actually great when it's super busy so in the end it all worked out. Although, I still love her response and I think I will use it in the future. "I am fading".
When I got to work today I expected a fury of issues to arise and our day would mimic the one before it. However, our morning was a duplicate but the afternoon was rather slow. I was able to get caught up on all my paperwork and had plenty of time to relax. However I had encountered sad news when I walked in the door today. An old friend had a granddaughter that was in a major accident. She was burned as she tried to rescue a friend from burning wreckage. She is very young and watched her best friend pass away. My heart BROKE for her. After that I heard that my cousins husbands dad was losing a portion of his leg. So this day was laced with a bit of sad information. I pray for all those that are encountering tragic situations. It's a reminder to me that life never goes as you plan it to.
I know I have posted some blogs that suggested I was struggling. I think I still deal with what happened to Jude and I still feel the heavy burden of our entire family's finances on my shoulders. I know this will change, but it's still very.............well heavy. I also know struggle because I know that I need a job that provides retirement. Let me preface this with letting people know that I understand I should have a retirement program in force (Easier sad than done when you need your entire check). Anyway, I am looking at my life in general. Man I am thankful I have a good job that understands I must leave when Jude is sick, however I know I must look around in the future. Eventually my boss will retire and I will need a different job. I want to go into claims when he retires. I have an adjuster license and VAST experience in insurance. I want to help put people's lives back together after a tragedy. I love helping people and the epitome of helping others would be to ease their pain in such a desperate situation as a total loss. To even think about my boss retiring at some point and leaving my job after so many years........sends me into a panic attack. To leave at all......makes me hyperventilate (grabbing a paper bag).
So let's turn our thoughts to Jude which is the basis of my blog. Jude is doing very well. Tonight I grabbed Emily's IPAD and I started the "monster" app that I have referenced before. The monster mimics your voice, pops balloons, and more. Jude LOVES "Leonard" the monster. He even hit the buttons several times to make the monster "talk". Jude also laughed hysterically when I tickled the soft part under his chin. He is such a good boy. I am thankful he has been healthy for so long.
We had a good Christmas! We feel blessed and loved. I am thrilled that we have our two beautiful children with us, that we have good jobs, and our health.
Today we gave Jude a much needed haircut. We put it off for so long because Jude just hates getting his haircut. I am not sure if it scares him or just bothers him. So Mike, Charlotte, and myself started giving Jude his haircut and Jude was just miserable. He wailed, he cried, and he whined. I felt so horrible for him. Afterwards I kissed and consoled Jude and sweet Charlotte gave him a warm bath. The final results show a clean cut Jude.
Since we were home today we got to talk with Jude's new speech therapist whom I LOVE. It turns out that his speech teacher from school resigned and is now a home health therapist. Jude is her first case and he perked up when he heard her voice. I think he was so happy to see her. She has great goals for Jude in regards to communication and I think she will succeed. Since Emily now has an IPAD she plans to incorporate it into Jude's therapy. He is not advanced enough to use many of the Apps, but she said he will enjoy an app that has a big cute monster that pops balloons and more.
Well I was suppose to have a lot of people over to my house for Christmas Eve, but that has fallen apart. For one reason or another people have had to back out. It's not their fault by any means. My cousin was one of the last families that was going to make it, but they had one of their little ones wind up sick last night... poor kiddo. So I have six little ornaments wrapped up on my counter for our ornament exchange, lots of food for everyone, three dozen cookies, and reindeer food that won't get used. I was all sad and Mike pointed out that we have our family here and that's what is important. So this morning I woke up and said...
Me: I had a dream that Em had gone to college and you left me so I really was alone for Christmas Mike: Did I have a girlfriend? Me: Yes Mike: was she good looking? Me: Yes..but I think you are missing the point Mike: How old was she? Me (irritated) I don't know! Mike: Like 20's? I mean I need to know this stuff hopefully I got one in the 20's. Me: (laughing) Mike: Tell me what channel your dream was on so I can finish it Me: your such a butt
Funny thing is I remember at the end of my dream I flew off to Maui. I was very proud of myself too for buying a ticket and jetting off. I was on the beach in a recliner with a drink in my hand enjoying the sunset...and I woke up happy. Moral of my story is that crap happens that you cannot control so make the best of it!
I wish everyone a Merry Christmas and I sure hope everyone feels better soon! I am so sorry people are sick during the holidays, shoo wee! My dad and his wife are still coming over and we having Tex-Mex tonight since tomorrow everyone will be having ham and turkey.
So we watched "Rise Of The Planet Of The Apes" last night. Of all movies.........Emily cried five times. I tried explaining to her that the Monkey's were CG, but she was still really upset at the animal abuse.
Jude has a bit of a fever today again, but not much. He just seems to get an elevated temp lately and then it will go away. The nurse is keeping track of him today and making sure he is alright.
I have been reading Jude books at night lately and he seems to love it. I take great pleasure in sharing something with Jude that I shared with Emily. It was very important to myself and to her her father that Emily was read to every night. When she got older she would then read to us. I thought she was brilliant at age 3 when she read "Brown Bear Brown Bear" to me, but then I realized she had memorized the book. Still not bad for a three year old. Jude watches the book as I turn the pages, he squeals, and talks to me as I say the words aloud. I think he truly enjoys it. I always say there is more going on in his mind than we think there is.
I have been a bit down again for pure selfish reasons. Mike has not gotten promoted at work yet like we anticipated, but I am grateful he has a job. We are crossing our fingers and hoping that Mike gets his lead position with a nice salary and full benefits. We still debate about having another baby. We both want one, but are very scared because of Jude's condition. We are scared because of money and because I would want to have a more flexible schedule. So who knows.........and we are running out of time. So It's a little disheartening to think about letting a dream go I guess. Looking back I guess I should have started my own agency at some point and I would be in a different position today.
It has been SUPER busy at work for the last two weeks. I like it like that, but whew! As of three o'clock today I was officially caught up and it's officially 100% DEAD! Everyone is starting to leave out for the holidays. I am primarily done with my shopping so we just have to sit back and enjoy our family, friends, and good memories. I hope everyone has a good holiday!
Anyone know what that big thing is above this post? lol! I am blogger challenged! Help!
For a quick update...Mikey is sick and therefore that means the world is coming to an end. When Men are sick they are always "dying". So he tossed and turned all night and Jude was up all night. About 5:30am Mike went upstairs and I slept like a bear hibernating. I slept so hard for that hour that I have had a spring in my step most of the day.....go figure!
Our new speech therapist is coming to evaluate Jude the Monday after Christmas. I am thrilled I will be home for the meeting. Also, my friend Jen left today for maternity leave. Many prayers for a safe and fast delivery for her on Thursday. I will primarily be the only licensed agent at work for six week, but I enjoy staying busy. It makes the days quick and keeps me going.
Anyway, any help with the above said "HTTP" issue would be great. Thanks!
So Saturday Jude's temp rose again, but I asked our nurse to not give him Motrin and to see how things went. I knew the temp could be fighting a viral infection off. About two hours later the fever broke and so far has not returned. It was so odd!
Jude was very smiley when I left today and I am looking forward to seeing him when I get home.
Well Jude has a fever today for some reason. It's not real high, but he is still on the antibiotics so we are wondering what the deal is. He did whine a lot last night while he was sleeping. So we are watching him to see what is going on.
He doesn't seem upset today, but we are watching him. I thought it might be his teeth again, but there aren't red. He actually felt a lot warmer to me than 99.4. I am not sure I trust these under the arm auxiliary temps. I really want to get Jude one those head scan thermometers that the hospital uses.
Anyway, we have my cousins foster baby's first birthday party today. I have really grown to love that little bug and I am looking forward to his party.
So this weekend I realized something. My husband loves me.............I mean he really loves me. I look in the mirror and see my reflection now and just feel terrible. The years and the stress have aged me. I still try to take my walks and would love to be a size 6 again, but I feel like I am walking against a hurricane. There is no time, there is no money, it's just well... bah humbug..lol. Despite my appearance I realized with a warm fuzzy feeling inside that he loves me for who I am. He still walks by me as I am cooking and hugs me. He still wakes up in the middle of the night and says, "You are the best mom and wife anyone could have". He still says "I am going to marry you someday". He may have his moments, but that guy loves me. I am lucky! Mike is my soul mate and just such a great guy. I love how he uses "Jude's" voice to cuss about toys and how Jude wants to be ready for the "zombie's" in 2012 (don't ask). It's so wrong, but hilarious. I also love how sweet and gentle he is with Jude and how great he is to Emily. He is the ultimate bad boy turned good with rough edges and I love him!
Here are some pictures from this weekend.
My big over 40 pound boy! You know if we stand him up he comes to my waist...and he is THREE?
Well I am feeling pretty run down today and my throat is sore. Not sure if Jude gave me his stuff or if I am just exhausted from Emily's play, Jude's being sick, etc. I need to be better by tomorrow because I have a lot to do! Tonight is the last night for Emily's show! She did great in "Yes, Virginia There Is A Santa Claus". She has been playing "Mary-Lou". I know I am her mom, but Emily truly has a natural talent for acting. Jude came with us to watch the show last night and he enjoyed it until everyone started clapping. He got very scared and Mike had to leave with him. Poor Jude!
Well little Jude had a rough time yesterday so we took him to the after care Cook's ER that just opened near our house. They escorted us right back and we got Jude all checked out. Turns out he has a sinus infection so they sent us on our way with some antibiotics. Once we got home Jude just didn't want to lay down and try to sleep. So I gathered him up and held him for until almost 10:30. He just wanted to be snuggled. He also sounded so strange when he was breathing. He kept making a crackling sound, but since I was told his lungs were clear I didn't worry to much. He then started making this weird parrot sound with his coughing. When Mike came downstairs I suggested the Abuterol. When Mike heard the said Parrot sound he immediately administered the Abuterol. Once that was done Jude settled down and went fast to sleep. He only woke up twice last night and had a smile on his face this morning so that's encouraging.
I am going to check on him throughout the day through Jude's nurse. Hopefully he will feel better today after the antibiotic.
Jude is sick. We escaped it for awhile, but my little man just really isn't feeling well. It started Saturday when Jude got up at 3:18am and didn't go back to sleep until 6am. We knew this was out of the norm for him. Basically the last few nights have continued with him being up and down, cranky, whining, and not himself. I wasn't getting my normal amount of smiles either. In fact, last night his smiles seemed a bit forced. Jude was also very difficult to get to sleep last night. Once he finally went down he woke up about an hour later and I didn't get him back to sleep until 12:30. If he doesn't sleep...his body won't heal. Keep in mind that Jude was doing all this through his sedative. He is now coughing, congested, and just seems achy. We keep the rotation of Tylenol and Motrin going........although we ran out of Motrin and I need to grab some on the way home. If anyone is by my house today and can drop off some Children's Motrin I would be grateful. So little Jude is out of school today. I am sure he will miss his teacher.
Charlotte said his throat is very red, green drainage is coming down his throat, no fever this morning (but has had low grade), his lungs sound clear, but his respiratory rate is in the 40's vs his normal 20's. You just never know with Jude?? This could be a simple cold he is battling or it could turn into something serious. Charlotte and I are wondering if this is a reaction to the flu shot? I know systematic reactions to flu generally last 1-2 days and we are going on five days with the symptoms getting worse. Jude got his shot on Thursday 12/1.
You just never know. I hate the unknown. It could be just a common cold.........or it may not. The may not is what always keeps me on my toes. It also keeps me unable to tune out Jude's whimpers at night like Mike tells me to. Since I cannot tune them out I tend to keep Mike awake because I am awake. Our house is a pleasant place to be right now..lol. Anyway, I put a call into the doctor and I am waiting to hear what she says. My guess it's either the flu shot, a cold, or an upper respiratory infection. The later is out major concern because that is the initial stage of possible pneumonia for Jude. Jude has started to vomit again due to his congestion and that seemed to be Charlotte's major concern due to the possible aspiration.
Hopefully he will be well soon and this will all be nothing to worry about.
I took the morning off to get Jude to his check up with his pediatrician. The doctor said she thinks the vein in his neck did warrant a full CBC. She also ordered a liver panel since we know the felbatol can wreak havoc on the liver. She took his blood pressure which was in normal limits. Jude was fairly happy while we were at the office until the took his blood. Normally Jude is a little trooper but the nurse couldn't find his vein and the needle was in his arm. I saw her wiggle the needle around and my body cringed at the thought of the pain. Jude soon became distressed and we knew we were in trouble when his bottom lip poked out. The nurse finished with the blood work and gave Jude his flu shot. This sent him into more tears so I picked up to soothe his hurt. I said "Mommy will rescue you!". Charlotte (our nurse) thought it was funny, but the doctor's nurse must not have thought it was that cute. Sheesh lighten up lady have some coffee or something. So now we just wait on the blood results.
I was contacted yesterday by a young mom who is in a similar situation I was in a few years ago when I was told Jude's brain vents were increased. I struggle sometimes about how candid I should be with these moms. Why do I struggle? Because it's their decision on what to do and how to move forward. I explain them just how amazing Jude is and how much he has done for our lives. I explain what an impact he has made on everyone around him. Although, I also explain just how difficult our life is and Jude's life is. Despite being pro-life people NEED to understand what they are getting into so I ask people to take their blinders off. Our doctor once told us they have an alarming rate of special needs children that are left at hospitals or dropped off. I cannot imagine Jude just laying somewhere with no one to pat him, love on him, or make him smile. This life is HARD, but it would never be that hard for me. I love Jude with all my heart. So put the dreams aside for a moment of the perfect child and make the best decision for you, for the baby, and for your family. Whatever that is don't ever look back with questions. No one imagines having a baby with special needs and you cannot imagine what it's like unless you have lived it. So therefore, I never judge anyone for whatever decision they make. I have been contacted by many moms over the past few years. They have all made various decisions. My heart aches for each one that emails me. I hear the pain in their words and I know how they feel. I know what lies ahead and all I can mutter is what I was told..."the first year is the hardest". It's so true.
Okay back to more positive issues. I really really want to work towards getting Jude this van. The chair is perfect! Not only does it lower to easily put Jude in his chair, but it reclines. Jude needs to recline to keep his head up and it helps with his aspiration issues. Jude coughs uncontrollably at times when he is sitting straight up. We have had to pull over to yank him out of the car seat to help him breathe again. So this is on my list. Dear Santa ~ can you swing it? Just kidding..lol!Iwas told that it's much safer to keep children and young adults restrained in a seat is possible vs a wheelchair when being transported. I am not sure I can continue to life him, but if I can this is a great solution.
