Today.......you won't believe this. Emily trained with Charlotte on how to replace Jude's G button. Charlotte thought it was important that everyone in the household know how to replace the G button in case of emergency. Emily had no fear about learning the G button process. Charlotte said she took it out with ease and put the new one in with ease. It's amazing to me that my soon to be 13 year old child can perform procedures many Rn's do not complete on a regular basis. If you have never seen a mic-key button you can google them.
Jude and I missed our nightly walk on Wednesday so we took Emily and walked last night. He giggled the majority of the way. He has started this new game where he throws his head out of the wheelchair and giggles because he knows I have to place his head back in the neck ring. Our nightly walks have become so routine that when I rolled Jude's wheelchair into the living room to pick Jude up our dog Bigs immediately hopped in the bottom carrier. Yes, Bigs still rides.......he doesn't walk. Mike commented on how the dog was worthless last night. I replied, "Seems pretty smart to me......I mean he hitches a free ride vs walking".
Jude was up again a few times last night and I was rather frustrated about 4:30am. It is still hard for me to grasp that we may never really sleep through the night again. Is that selfish to be frustrated? I mean poor Jude is reaching out to me because he is so aggravated he cannot roll over on his own. I would get so tired of laying in the same position that I would wake up several times during the night too!
We have a busy weekend lying ahead of us. I hope everyone has an amazing weekend.
It seems my diaper post created a buzz about town. I received more emails from non special needs parents and special needs parents than I ever have. The tone of the emails reminded of the parting of the red sea. The non special needs moms were so sweet and generous offering me great advice on where to pick up bigger diapers. The special needs moms realized I was upset I needed diapers at all and that Pampers email sent me over the edge for a few minutes. Regardless, both sides were just so nice and I was overwhelmed by all the amazing help. For the record my medical supply company is working on obtaining the diapers again through the MDCP program.
I reached out to therapy 2000 here in the metroplex and they can do in home therapy for Jude. This is amazing! They are pursuing physical, occupational, and speech, which is what he has at Baylor. The bus driver almost injured our nurse and Jude transporting them to Baylor on Monday so the in home therapy is a must in my eyes. I also talked to the medical equipment company about the new wheelchair. They are going to wait until the physical therapist has been assigned by Therapy 2000 and then they will work together to secure the perfect device. We also heard from our nurse of a doctor that can do a test to tell what Jude can actually see. I find this fascinating! We will be completing that test for sure.
So Emily is doing well. She has her big birthday party/fundraising event next Friday. We are completing 400 Smile Boxes to go out to local hospitals. She has a raffle, a costume contest, and more to raise funds for her charity. She is also doing well in school and is busy working on her play the "Wizard Of Oz". She has also decided that her future goal is going to be to compete in the Miss Texas/America system for the Miss Outstanding Teen. This is a lofty goal, but once I think she will do well at. We are working on getting her "resume" together showing her scholastic abilities and accomplishments. She has chosen that her platform will be Pediatric Stroke Awareness and she is currently picking a monologue for her talent. She needs to obtain an acting coach if anyone knows of one that is willing to work with her on the weekend.
After Emily's party I have decided to take a break from everything until January 1. I need some rest and would like to spend some time with the family.
Tonight Mike went to the Dallas Cowboys game........without me...insert evil eyes. It's really okay because I wanted him to go have a wonderful time with his friends because he deserves it. So we had a nice relaxing evening at home. Emily has been doing homework and Jude and I went for our nightly walk. Once we got home from our walk I began to get Jude ready for bed, like I always do. I changed his diaper, put him in his pajamas, positioned him into bed, and readied his medication. I pumped the feeding into his IV bag and positioned the IV line for his G button. Then I began inserting medications. When I got to his sedative I felt a tug.........then a stop..........then my mouth dropped open. I do a lot for Jude........, but Mike replaces the G button (if our nurse is out, but it's only happened twice without her).......I just haven't been able to yet. "Not tonight Lord" I whispered........ "please". I pumped, I plunged, I pushed....I used soda, I used a q tip, I sprayed water all over everywhere due to pressure build up......and the Lord replied "It's time to learn Jennifer". OH NO! PANIC. I calmed my nerves and picked up the phone to call our nurse. "Charlotte" I said meekly. "Jude's button is stuck and I need you to walk me through physically taking it out and replacing it." Let me just tell you that woman is our angel. She spoke to me in a soft gentle manner with clear instructions. I grabbed Jude's G button bag and quickly followed all her commands. I put the water in the new button too make sure the balloon would inflate. I then put K Y jelly on the tip of the new button so it could be inserted easily and quickly. I let the water out of the old button to deflate it and began to tug to pull it out of Jude's stomach.......and he began to scream. I began to cry because I was hurting him and I felt like I was ripping his insides out. Charlotte calmed me down and assured me it was just because the button had been in for a long time. I soon got the button out and cleaned the open wound........and Jude laughed so I breathed a little easier. I inserted the new button and checked for placement. I knew how to check for placement due to the NG tube, but I still worried. Emily stood there the entire time offering her assistance if needed. Near the end of my conversation with Jude I asked Emily to run to get me Motrin which she did. She brought back the whole bottle and then looked at me with a grin. " I guess you need it in a syringe huh". I think we were all very frazzles, but ........we got it done.
Thank God for Charlotte. Like I said........I have done and learned more in the medical field than I ever imagined without a degree, but this I hadn't done yet. What an experience. Whew! You veteran moms are awesome, but I don't like doing that...lol.
** follow up. I had a good cry tonight. I cried because I innocently didn't know how to take care of the G button incident without help and I cried because I SHOULD have known how to without help. It was a conflict of emotions.
So when I was pregnant with Jude I went and signed up for the great notifications and coupons offered from companies like Pampers, Enfamil, and more. After Jude's diagnosis I quickly took myself off the lists when I started getting bombarded with Emails in regards to my baby's progress. The emails reminded me Jude had a lack of "normal" progress and I didn't like that. The only email that has been very difficult to shut off for some reason is Pampers. So since our insurance has still not approved diapers I had to go to the store yesterday to rummage through the aisle to try and find size 6 diapers. I guess they don't sell that many of those size so the larger boxes are always difficult to locate unless you buy training pants, or go Costco. So I buy two small packages to make up for the large package I need. I get home and Jude was just smiling away like he knew I had brought him new diapers.
Once I got to my computer I sat down and there IT WAS.... was a happy joyous email from Pampers telling me how they have a great training pant for my toddler. It will move with him while he runs, walks, sits, and gets into items. I muttered a few hateful words to the diaper company, hit delete, and then mentioned how it would be great if they supported special needs families. Maybe a great picture of a special needs baby on the box with the slogan, "we even have YOUR butt covered". Guess that wouldn't be very media friendly huh?
Okay so I am a little miffy today ... SUE ME! I was up with Jude ten times last night. I am so cranky that I think it should be mandatory for people who don't sleep for so long to win the lottery so they don't have to work. Well not really, but it sounded good.
** follow up ~ Thanks for all the emails, but the blog was more about my Pampers email than the diapers. I can go to Coscto and get the big box of diapers for Jude. Also, Medco is working on getting them covered which shouldn't take much longer. You guys are sweet.
Last night I picked Jude up and wrapped his legs around my waist with my arm supporting his back. He held his little head up and I could tell he was looking over at Mike. Mike then walked around me and Jude's head followed Mike. This is a HUGE accomplishment for him!
I was proud! I think Mike may have thought it was a fluke, but I watched Jude's motions. He is working hard.
Today I put a call into the medical supply company that we use. We are going to start the process to get Jude a new wheelchair. As I stated before his current wheelchair doesn't fit him anymore and it's not the proper equipment for his newly diagnosed Scoliosis. We are also looking into getting Jude a large bean bag to sit in. He is very uncomfortable in his tomato seat, but he will stay there for about an hour. Jude's favorite position is to lay flat on the floor, but he cannot always be in that position. It isn't healthy for him! He is making great strides on lifting his head with the wedge they have provided him from school. It looks like a boogie board with a strap to hold Jude's legs down.
I believe that we finally have the perfect dosage of seizure medication. Jude doesn't seem over medicated nor does he seem under medicated. It seems we have hit the level track of the roller coaster and I hope we stay there for awhile.
I am working with Jude on saying "Good Night" when he goes to bed. He will make vowel sounds at me so I know he understands I am talking directly to him. Charlotte said his speech therapists wants us to repeat Jude's sounds to him after he makes them. I have been trying to do this and he does perk up his head when I repeat what he says. It's pretty cute!
Emily is still well. She has all A's and one B on her progress report. She is also working away on her play that will premier in November. I also took the time to contact a talent agency about working with Emily. I am not sure anything will ever come of it, but she requested that I talk to someone.
Well two weeks and we will have Emily's big party, fundraiser, and box making party. I am thrilled at the potential turn out. I think it will be a success.
Sorry it's taken me until Wednesday to update. This past weekend was a whirlwind of fun. We took Emily to a pageant in Dallas that she really wanted to compete in. We all gathered ourselves and our suitcases up and then headed out to the hotel. Jude has several suitcases, but he made it too and as you can see he loved the hotel bed.
Allen our weekend nurse came to stay in the hotel during the day with Jude while we ran around getting Emily ready for competition. Allen is just so sweet. Every time he would see Emily he would compliment her on how pretty she looked. He had the big curtains pulled back and Jude was laying in the sun smiling away. About 1pm on Saturday Jude started running a fever, which drew a little concern, but that quickly subsided when the Motrin brought the fever down. We attributed it to teeth.
Emily truly had a blast. She was there with her friend Havyn. Emily and Havyn met at a pageant 10 years ago and have been close friends ever since. This was Havyns first pageant in 9 years!!! Havyn spent the night both nights in our room.
Saturday afternoon the big girls competed. Emily did beauty, then fashionwear, a ballerina routine, and then her talent. She performed a Monologue from Alice in Wonderland. She was truly amazing and did so well all day. When she got done she said "Mom I am so proud of myself. I really tried hard and it doesn't matter what I get!". I was very proud of her! Saturday night they had a "Hollywood Premier" party. All the girls walked the red carpet going into the party. After the party we all went down for a dip in the hot tub.
Although, I think Emily felt a bit like Christmas just ended.
So we submitted information to Scottish Rite to put Jude on the list to be considered for orthopedic therapy. He needs a new wheelchair to accommodate his scoliosis so I hope we are able to do that. He is doing amazing in school and his nurse assures us that he is very loved there. He is also outgrowing his bath chair. It's amazing how tall Jude is. He is making great strides with his head control too. Jude's issues are really mostly upper body so to see him lift his head high when on a wedge is a great thing. It's becoming difficult to get Jude to all his doctor appointments since Mike and I work. Charlotte can go with him through SPAN, but that proves to be a nightmare every time we use them.
Speaking of Love, I had a client call yesterday sobbing. She had lost her husband a few weeks ago and just sobbed "He was my entire world". It just broke my heart. Death just seems to sneak up on people and hurts those they love.
Emily's Smile Boxes received another large donation yesterday. We will now be able to hold a Christmas Box party on top of her 300 boxes form her birthday party in two weeks. We are just thrilled!!!! That's so many children we can help smile for a bit.
As a follow up to my post this morning here is the picture of Emily receiving her amazing donation to her charity Emily's Smile Boxes. What a blessing! This will help so many children.
Mike normally gets up at 4:30am to go work out, but today he decided to skip a day. I think we all needed that extra hour of sleep. Jude did not wake up until Mike got up for work at 5:45. Mike and I had slept hard until that point. Jude got up a few times last night, but he was up for the day when Mike was leaving. I laid in my room listening to him laugh through the baby monitor for a bit, but now I am up. He is in a very good mood this morning. I just walked into his room and he started laughing. I told him to not make fun of mommy without makeup :).
Last night we went up tot he Marriott to finalize the plans for Emily's birthday party/fundraiser. We walked into a room FILLED with supplies the DFW NACE had collected for Emily's Smile Boxes. Joy who works for the Marriott had worked with NACE to collect all the items. I will post a picture of everything later, but we were truly overwhelmed. It was so nice! We are surrounded by great people.
Jude was up about 2-3 times every hour last night. I gave him a stern talking too (just kidding), but he didn't listen. Therefore, I have really been pretty tired today. Although, since I started working out again I am not overly tired. Jude seems to be doing better with his illness and he is making great progress in school. Charlotte said that he turned from his side to his tummy three times today. He is also still smiling and laughing a lot. He is just a happy little boy. I hope he is so because he knows we love him so much. The other day at Cook's ER Jude was doing his "running" on the gurney and I asked him "Jude where are you going?". To our surprise Jude replied "Hoooooooooon" and kept running. I truly believe he thought he was going to his home he loves so much. If anything ever happens to my job I have to do what I can to keep our home. He feels so safe and secure there and really expresses this to everyone that comes to our house. Jude also had a bruise on the back of his calf last night and I was concerned. I get concerned any time I feel like he is hurting. After calling Mike in to investigate the bruise he matched it to his leg braces. Charlotte is worried that the brace got to tight either in the bus or on his wheelchair. They are going to loosen them up a little. We also are going to look into a different wheelchair since we know Jude has scoliosis. We are planning on taking him to Scottish Rite to see a orthopedist.
So today I ordered the last supplies for the 300 Emily's Smile Boxes we are making at Emily's birthday party. I also ordered 30 boxes for a friend who wants to hold a box making party at a Cinderella pageant. If you haven't heard of Cinderella scholarship you can see them at this link: http://cinderellapageant.com/. They have a small prelim in Weatherford and they wanted to promote making the boxes. It's 100% natural and a great system. This leads me into my other topic. It seems a horrible episode of Toddlers and Tiaras has made the cover of People magazine this week...sigh. Emily is disheartened when she hears people ridicule pageants because she works so hard at them and loves them. I try to explain to her that the community as a whole has a habit of judging everything by it's appearance and lumping everything into one category. This show is based off ratings and therefore they follow those families that will boost their ratings. A natural or toned down system that promotes charity work and teaches girls about inner beauty wouldn't rate as well as something so scandalous like a high end glitz system with a skimpy outfits on toddlers. I am appalled a woman would dress her 3 year old up as Julia Roberts playing the hooker in Pretty Woman. As a director I would have personally pulled them off the stage. When that aired I looked at my husband and said "this is a joke right? This can't be real". Let me stress that there are good systems out there that promote education, fun, charity work, and more. Emily doesn't use hair pieces, or flippers, and only uses natural photo's. This is just our choice and one we stand by. Yes, she wears makeup under the harsh stage lights. Emily has a wonderful coach who supports her and works with our family. We have made some of the best friends possible doing pageants and we are grateful for them. Our non pageant friends she and I have brought to her events have left saying "that was so fun and not what I expected!". So I hope that America knows that there are positive sides to pageantry. Emily is eloquent, she makes excellent grades, she works hard, and she is gracious when winning or not winning. She understands that pageants are not based solely on beauty but also hard work. She had her choice between softball, dance, pageants, theatre and more. She personally chose pageants and theatre. Someday her goal is to go into the Miss Teen Texas sector and hopefully obtain a scholarship for college. Anyway, I just wanted to express my views.
Emily's Pageant coach Cristina. One of her best friends. She looks like Miss Universe huh?
This is Maddie! A pageant girl hard at work helping out her community
Pageant girls making Smile Boxes.
Great friends are made at pageants. Regal Princess contestants.
Per my prior blog you can see about that Jude really is ALL boy....because he loves fart noises (insert laugh here). Jude is feeling better, but is still getting pretty congested before bed and is having a hard time sleeping. He doesn't fully wake up, but he whines multiple times throughout the night requesting to be repositioned. Mike and I are both really tired! Charlotte got there today and I let her in the door and then stumbled back to bed for 45 minutes prior to work. I slept so hard that I thought I had been in my bed for three hours. I panicked and checked my phone.......it had only been twenty minutes (insert another laugh).
Jude was a funny boy all weekend. I went to the restroom and when I had gotten back little Jude had somehow manuevered a cloth diaper on to his face. We keep the cloth diapers near him in case he throws up. Anyway, he thought it was the funniest thing EVER!
He makes me smile!!! For a long time I wondered what I did wrong to have a baby that had so many medical issues. Maybe I had done something in my past? Now I realize I was really blessed with the perfect child that has touched so many people's lives.
Jude was up congested throughout the night. He coughed, he wheezed, he just seemed very restless. I went ahead and went to work after informing his nurse what his night was like. About 9am I got a call at work that she was concerned about Jude. That is highly unusual for her so I knew she was concerned. She said that Jude had suffered about a 45 minute cluster seizure, had an elevated temp, and his heart rate was hovering between 180 - 200. After calling the DR we called 911 and had them come get Jude.
Luckily we were discharged with a diagnosis of a viral upper respiratory infection most likely contracted from allergies from the TX wildfires. Crazy huh? So we are at home with a prescription for steroids (if needed) and extra sedative to help him sleep through the seizures.
Luckily he is okay. Also, can I ask for some prayers for my cousin. She is facing a difficult time right now and her heart needs hugs.
Thanks!
It seems someone nominated my little ole blog for an award. How neat is that? If you want to vote here is the link
http://blog-awards.parents.com/blog-awards/mom_blogs/908
Jude is creating the habit of getting up when Mike leaves for work which is about 5:30am. This is wearing me out. I am not a morning person. My family always jokes that I want "all my minutes" when I am sleeping. My husband would prefer to just get out of bed when he wakes up. I would hit the snooze button 100 times if I could.
Jude is continuing to do well at school. His nurse Charlotte said that vision therapy and physical therapy both came to see him yesterday. The teachers also made the decision to have Jude in a classroom where it's one on one. There was another little boy in there, but someone has to always be holding him or he runs to Jude and creates issues. I was worried about the level of noise disturbing Jude at the school, but Charlotte said he loves hearing the children. She said that Jude starts "talking" when he hears them. Charlotte is trying to communicate to the teachers what Jude can do and what our goals are. She said they are currently a bit "scared" of Jude. I understand exactly what she meant by saying the word "scared". People are afraid they are going to hurt him so they are very timid when they first meet him. Soon they learn that Jude loves to play, tickle, and "wrestle"....he is very much a boy.
Last night when I got home I laid down in the floor with Jude and said "so this is how you see the world?". Jude likes being on his mat and looking around. It's his favorite place to be and to play. He will bat at his musical toys over and over. Would I prefer it if Jude was outside playing football? I wish that for him, but he is really happy just playing with his toys on his favorite mat in his home. He loves his home.
I need some time away with my husband again. We get so immersed in our lives that we forget about needing time for each other. I am going to work on making that happen even if it's just dinner out.
I thought I would just share pictures today to follow up to yesterdays blog.
Working on head control
Em at the museum
Mike at the museum
Jude is all smiles for school!
Jude's teacher loves him! I love this picture!!!
It has been a beautiful labor day weekend at the Ortiz house! Jude had the perfect birthday party which was quiet, inviting, and full of friends and family. We had the perfect balance of those that loved to play and those that loved to just sit and particpate in conversation. In the end Jude got lots of wonderful fall clothes, a few musical toys, and lots of hugs and kisses which are invaluable.
Tomorrow my little boy starts school. We are all a bit perplexed in regards to the bus schedule and how the day will play out, but I guess it's that way when Emily starts too. In the end I am sure it will all work out. I felt a bit unprepared, but I did call and find out what I could regarding his transportation.
I have so many photo's to share from this weekend, but I decided to post them after Jude's first day. Mike and I also decided to start a work out routine tomorrow today, but on different playing grounds. When Mike and I met we were both very into fitness. I don't mean your average run of the mill circuit machines, but meals, trainers, muscle mass, BMI, and more. At one point my BMI was 7%...no joke! I knew what to eat to fuel my body to exercise and to live. Some people can take excersise to an extremime, but it's something I loved. I let it go because of everything that happened with Jude. The gyms do not allow disabled children with seizures disorders in their daycares so I really felt I had NO time to work out. It wasn't fair to come home and leave him. Jude really could not stand going out for the amount of work out I desired, and I desired his life in mine more than I did the work out. I am not sure it will work this time, but I am still trying. Starting tomorrow I am on a 60 day STRICT DIET! No sweets, no wine, and a heavy work out. At the end of those 60 days I can gradually fit my treats back in...just like I used to. Mike was all geared up today. He left the house at 5am with his gym bag, his supplements, and his lunch. Hopefully things went well for him.
I will post lots of pictures on Wedesday :) I am hoping everything goes smoothly today with Jude's school. He got me up at 4 this morning so I know he is going to be a bit tired today.
Tomorrow is Jude's third birthday. What a blessing he is to us! I hope for many more years with my precious little boy. Happy Birthday son, I love you.
"The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him". – Pablo Casals
