Where it all began

If you are just joining my blog you may want to begin reading back in April of 2008 when our saga began www.cjengo.blogspot.com/2008_04_01_archive.html . Basically we were given a grave outlook for our baby when a level 2 sonogram was performed, They discovered a bilateral stroke, or "brain bleed". You could actually see two small dark spots of blood on his in utero MRI. From there we went through being told to terminate, fearing for his life, denial, acceptance, sorrow, hope, defiance, and pure joy. We were told his issues could range from nothing at all to "profound retardation", so we had to give him a chance at life. Jude was born a happy and what we thought was a healthy baby scoring a 9.9 on his apgar. At three months he was rolling, smiling, and seemed to be doing very well. Suddenly one night Jude had what I thought was a seizure and soon my worst fears were confirmed.Jude's early in utero stroke had caused massive damage. Our brain cells come from our choroid plexus and that's were his bleed was. This caused a neuronal migrational disorder, that in turn caused bilateral closed lipped schizencephaly (can be caused by vascular insult). That means Jude has "clefts" on both sides of his brain, but it's worse on one side. Jude also has vision loss, cerebral Palsy, and epilepsy. His seizures (Infantile spasms) grew loud, and violent as we chased a medication to control them. We were lucky to find that Depakene was our saving grace! After many sleepless nights, a baby in pain, and a prescription for even more Depakene his seizures were some what controlled. We are so thankful, because some parents never find any controlling factor for seizures. So please join us for our journey. Learn why Jude's laughs and smiles mean so much to us. Follow our little inspiration as he teaches those around him to be grateful for their life, their children, and to find all babies a blessing. Join our fight in spreading stroke awareness and help us help others. Find out why my daughter Emily has shown us what the definition of compassion really is and how she spreads smiles through hospitals. You can visit her website at http://www.emilyssmileboxes.com/. We have spent countless hours in the hospital with Jude and it's now our mission to spread as many smiles as we can through hospitals via her charity. Thank you for being here and for reading about our blessings. Our motto: One day at a time we put one foot in front of the other.

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Tuesday, November 27, 2012

So Jude was released from the hospital on Wednesday night and was able to spend Thanksgiving with me. Since Mike and Em had plans Jude and I stayed home and cooked and watched the parades. We had a good time together. However, I want to point out that Jude was still very ill when they sent him home. The doctor said that he felt Jude would do better at home and he knew we were capable of handling the situation vs others that may not be. I was actually very worried about taking him home because he threw up twice before we could even get him in his wheelchair to leave the hospital. However, he seemed to light up when we got home and seemed to be much happier. He is still coughing, pale, and having a few issues, but he is much happier. We are considering getting a night nurse for a few weeks until he is 100% better. If he should vomit in the middle of the night and aspirate then we take the chance of this happening all over again. Here is a picture from last night when I was talking to him.

Since Jude was home we decided that I would take Emily to her Miss Texas Teen USA competition in Houston. She had trained for it for a year and it was only fair to get her there. On Friday at 2pm I dropped her off to her chaperon. She then checked into her hotel room with her roommate and learned what their schedule would be. I didn't see Emily again until the next morning at 8am when they did a "swimwear preview" of all 101 contestants. Emily looked a little nervous her first time out on the stage (it's a BIG stage), but I was SO proud of her. I am also very glad they did the preview because it gave each girl a chance to get accustomed to the stage prior to competition.

After the 8am show the parents were on their own until 7pm that night. The girls went to interview and 5 hours rehearsals for the big 7pm prelim show. I must say I thought Emily looked very pretty going into interview.

Emily was responsible for her own hair and makeup the entire weekend. They do not allow hair/makeup artists to come in. The girls are also responsible for being on time, getting to bed, and keeping their energy up with snacks. They did feed them lunch and dinner at a specified time each day. So it was a lesson in responsibility.So the 7pm show was GREAT! They did a parade of cities, then they competed in swimwear, and then evening gown. I was so proud of my little 14 year old. She really held her own against all the big girls. I think you can tell from her smile that she was having a great time and loved it

The next day we didn't get to see the girls until 1pm. It was the final show and they put on a full Miss USA type production. I was SO impressed. They did full dance number (Emily's favorite part) and then they called the top 15. Let me state we KNEW Emily would not be in the top 15 this year. I love my child and I have confidence in her, but honestly she didn't need to win this year. She was there learning the ropes and is still to young to take on the job of Miss Texas Teen USA. They won't generally pick anyone under 16 because it truly is a job. So Emily was not disappointed because she knew she was there to learn. After the competition I asked her "Do you want to do this again?". She was quite for a minute and then said "I am very tired and it's exhausting, but I know it will just get easier each year I do this". So I asked her "well you need to ask yourself do you really want to be Miss Texas Teen USA someday" and she said "Mom I want that job more than you will ever know!! I want to work hard, practice, and learn more so I can get the title someday". However, Em's weekend was not without some stress. She seemed VERY upset Saturday night after competition and this worried me. I finally got it out of her that she accidentally stepped on another girls dress twice coming off stage. This happens... especially with trains! Well I guess the other girl turned around and said "just watch where you are going" and it hurt Emily's feelings. She felt she sabotaged the other girl when it was just an accident. On top of that her roommate had friends there competing and Emily didn't know anyone so she was a bit lonely.........and left in a room by herself. So I explained to her that this was a lesson that it's okay to be alone sometimes and that if you want friends..........go out and make them! Be outgoing and don't be afraid to meet people. I also told her that accidents happen and not to let it get to her. So overall it was a GREAT .......... but tiring weekend. I am so proud of her and the lessons she learned! On the way home she talked non stop about the people she met, her future goals, the dress she wants, and more. I am glad we went. She also met some people that are local and can help her move forward. I am also SO thankful that Gina flew into Houston to stay with me. I would have been so lost without her. I am also grateful for Carolyn, Kaylee, Lily, Cara, Kendall, Emily's dad, and Emily's grandparents for attending. Her grandparents even said "we will be here every year that she participates!". Made Em and I feel great. So now we rest for awhile! :)

Wednesday, November 21, 2012

Jude was smiling at me more last night which is good, but his fever crept back up about 8pm. I am waiting to hear if there is an update from the doctor. Currently Mike's mom and my family is sitting with Jude until I can get away from work. We are very slow today so I am hoping I can break away pretty early. I feel bad that I have missed so much work in the last two weeks, but I guess life happens.

Emily did not sleep well at all last night and today she feels rather warm. So please amp up the prayers that she stays healthy. She has literally worked for almost a year training for Miss Texas Teen USA. We are suppose to leave early Friday morning so we can get to the hotel in time for orientation. She is still practicing hard, but is a bit nervous. I told her she has to get her nerves under control and she knows how to do this because of her plays.

I will update when I hear more about Jude. I miss my little buddy and I am ready for him to be home.

Tuesday, November 20, 2012

So we went to the ER yesterday and after several tests we learned Jude had pneumonia. They insisted on giving him two bags of antibiotics in the ER prior to admitting him upstairs. Mike stayed with Jude last night because I had to be at work at 8:30. I hated leaving Jude, but I was already out half the week last week due to my illness. I am getting round the clock updates from Mike. The doctor came in this morning and said a few things. The pneumonia is in one lung and it's in the lower part which is good. It's also good Jude is not requiring oxygen. However he is still very pale and running a high fever. They want his fever broken before they send him home so he will be there a few days. The doctor said he believes the pneumonia may have happened due to a natural breakdown of Jude's lungs. This is so strange to me because I just told a friend the other day I don't think Jude's body is holding up as well as it used to. However, he also said it could be due to him catching my virus and then aspirating on some throw up. So they are giving him IV fluids and administering the antibiotic and we are hoping he will be home in a few days. I am still planning on taking Emily to Houston unless something happens and Jude takes a turn for the worse. I will then send her with her dad.

Monday, November 19, 2012

So if you have kept up with our facebook you know I had one terrible stomach virus that started early last Sunday 11/11 morning. It lasted until Thursday...............it was awful!! On Sunday night (11/11) Jude also started running a fever and acting lethargic. On Thursday we took him into the clinic to have him checked out. They ran a blood test and checked him over. The doctor determined that he was probably fighting my virus, but he was doing a better job than I was. They then informed us to bring Jude back in 48 hours if he wasn't any better. He also informed us Jude seemed a bit anemic according to his blood results and to check with his primary doctor. This past Saturday 11/17 Jude began throwing up at night around the clock. I thought it was my stomach virus for sure, but we realized Jude was having issues actually going to the bathroom. This causes Jude to retch and throw up. So he spiked a fever again and again we were baffled. Then yesterday he finally seemed to be feeling a bit better and I was relieved. So at lunch with Mike I texted Charlotte to see how Jude was doing only to get a suprising response. Jude's fever was back at 102.1 and he was lethargic again. His other stats didn't sound much better. So I put a call into the primary doctor who informed me that Jude needed to go to Cooks downtown and to be prepared he might be admitted. She also said that his blood results showed both his clotting factors were down. I asked if this could be a concern due to the fact he suffered a bleeding stroke in utero. She said that to her it's concerning and would like to run a few tests. So I realized in a very teary way that Jude and Mike would not be able to go to Houston for Emily's competition. I know that's not what is important here, but it is important to me and it makes me very sad. So I called and told Emily what was going on and I heard the dissapointment (once again) in her voice. I then saw little updates from her bounce up on facebook from her Smile Box page to her brothers fan page she has. I know she is let down and I am let down. I wanted them with us at this important event and I sure don't want to be there alone. So I put some calls out to see if I can find a friend to go with me. Em will be spending all her time with the group and I will be looking for stuff to do. On top of this I am also very concerned about Jude. I am emotional and stressed. I want him to be okay and this may just be a simple virus, but I have been noticing something. I have noticed how Jude's body is just not what it used to be. He seems to be having a harder time sleeping, coughing.......regulating. Maybe it's just a mom thing that I sense it..........but I do...I feel it. It's not a matter of not being positive because I am and I love him very much I can just see there is something going on with him.

Friday, November 9, 2012

Our good friend Gena and her son Frankie were chosen for the Kidds Kids trip this year. If you aren't familiar with Kidds Kids they take terminally or chronically ill children and their families to Disney World every year. We were very happy that they were chosen. I have been watching the pictures they have been posting showing how much fun they are having. They deserve it! Gena does so much for others including us. With their trip I have been told several times "You guys should apply for that". I would love it, Emily would love it, but Jude ..............well Jude would hate it! I know my son and I also know that his mental capabilities are not like the children chosen for that trip. There isn't anything wrong with that it's just that I understand there are other children who would enjoy it more. Jude's idea of a great time is being on his futon or being held by his mom. He is a little home body. Would I like to take Jude to Disney World and have him enjoy it? Of course. Would I love to take Emily while she is still at an age that things are new and exciting? Yes. However, I understand and accept that this is not in Jude's best interest. I think sometimes special needs parents push their children to do things that "normal" children do to make themselves feel better rather than looking out for their child's best interest. So today my cousin adopts her foster child and I am thrilled for her. I am wishing them a life of great things.

About Me

A mother to two beautiful children including one with disabilities. A wife to the most wonderful man ever. I have been blogging since April of 2008 at my site regarding my sons issues. I enjoy writing, entertaining, reading, bubble baths, white wine, and warm weather. I am honest, sometimes blunt, and to nice for my own good. I appreciate you following our journey.