The little boy above is close to my heart. He is part of my extended family. You see Julian is one of Jeremy's brothers from his dad's side. As I type this Julian is undergoing surgery to have a shunt placed to relieve pressure off his brain stem. The prognosis isn't looking good. As the Neurosurgeon explained to Tommy (Jeremy and Julian's dad), the brain stem is one of the parts of the brain that is least tolerable to injury.
What lead up to this point is as follows. Tommy and Carla (Julian's parents) were headed to a parent teacher conference with Julian. Originally, Julian was to stay with his grandmother, but asked if he could go with them. At some point Julian suddenly started complaining of his head hurting and saying something was wrong. His dad had him turn his neck from side to side asking him if his neck was hurting too. (Jeremy's dad is also a nurse and was thinking this could be meningitis.) He decided to give him some ibuprofen and they headed to the parent teacher conference. On the way there, he kept asking Julian questions which he answered without any problems. They met with the teacher and after it was over they were walking towards Julian's desk to pick up his things when Julian began crying. Tommy kept asking Julian what's wrong, but Julian didn't respond. He sat him down in a chair and Julian's head fell back. At that point, he lowered him to the floor, and Julian began having seizures and posturing. Julian was brought to the nearest hospital and from there he was life flighted to Hartford where he was intubated on a ventilator in the PICU up until this surgery.
Julian had a AV malformation in his ear a few years back that was surgically repaired. It looks like he had another AV malformation in his brain stem that went undetected.
Tommy also mentioned that Julian wrote him and Carla letters this afternoon telling them how much he loved them. Tommy said the letters sounded like he was saying goodbye.
My son is obviously upset as we all are. All I can do is pray with him, hold him and comfort him. I wish I could make this all better. Will you all please, Please, PLEASE pray for Julian and ask God to give him a miracle?
Lord please be with Julian and give him a miracle. Lord, put Your healing hand on him. Be with his surgeons, doctors, nurses and anyone else involved in his care. Give them the wisdom to know exactly the right thing to do. And Lord be with his parents, Jeremy, and other loved ones as they go through this difficult time. Let them feel the comfort of Your Presence. I ask and pray this in Your Holy Name, Jesus. Amen!
Thursday, November 18, 2010
Monday, October 25, 2010
Welcome Back ME!! I didn't intend to take such a long hitaus from blogging, but I did. Then, we lost our our old blog domain (gabis-world.com). So please note that we have a new address gabisworld.com (no hyphen). So much to catch you all up on if you aren't following us on Facebook. But for now we will just address today and this weekend's walk for Down syndrome.
Gabi Had Surgery On Her Ears Today
Several weeks back, I took Gabi to her ENT. She kept telling me her ears were "broken," and she had a horrible smell coming from her left ear. As expected, she had an infection in her left ear. She was placed on ear drops and oral antibiotics. On her follow up appointment, the infection had cleared, but her right ear had wax that was attached to the ear drum. The attempt to remove this in office failed, and surgery was scheduled for Gabi.
Today was the surgery date. I slept on the couch to prevent Gabi from ruining her nothing by mouth status by waking early and invading the refrigerator and kitchen. She amazingly didn't wake early this morning.
In the waiting room, Gabi played with a sand box that you move cars and boats with a magnet from underneath and a really neat interactive wall. As you can see in this picture above, Gabi was actually catching the falling projected colors in her arms.
This was preoperatively. They had just given Gabi Versed. It obviously had not taken affect yet.
And this was in the recovery room as she was beginning to wake up.
Unfortunately, the surgery didn't go quite as well as we hoped. We hoped that she would have the right ear cleaned out and find her tubes intact. The tubes were both protruding with granulation tissue. Her ENT said this is what happens when the ears reject the tubes. So the tubes had to be removed. New tubes were not put in at this time. The ENT said the new tubes would reject as well under the current condition of her ears. We have to allow the holes to seal off and pray that fluid does not collect in her ears again. If they do, then she has to have surgery again.
DSSASI 2010 Capabilties Walk and Talent Show (formerly Buddy Walk)
Our walk was this past Saturday. The kids all had fun. We had our family of seven plus Nana and Papa who have been visiting us from South Florida and Ms. Elise (Gabi's teacher) with us to support our wonderful blessing on this special day. Here are a few pics from that day:
Gabi also visited the Home Depot booth and helped build a bean bag toss game or as known in some areas "corn hole."
Preston played a few games and was excited to tell his sissy that he won her a stuffed animal.
This was during the walk. The boys had all walked ahead while us girls took pictures and talked during the walk.
Monday, May 3, 2010
A few years back, when we moved 2 cities over, I was trying to pull a fast one on the school system by not changing Gabi's school. I kept her at the same daycare and was going to have the bus continue to pick her up and drop her off at the daycare like they always did. After all her school had a great reputation for it's special needs classes and I heard horrible things about the schools where we had moved to. Well, I made the mistake of including Gabi's teacher at the time in our plans. I didn't think it would be an issue. After all, she cared just as much for Gabi as we did, right? Wrong! She threw us to the wolves as far as I was concerned. After all, SHE was the one who said all of those bad things about the schools in the city we moved to. I got a call while I was at work from the principal that we either had to pay an incredibly ridiculous tuition to keep Gabi in this "public school" or she could not continue there. I was pregnant with Preston and raging with hormones. I spent the entire day crying my eyes out because I was hurt that her teacher didn't care and that God could allow this to happen. I just knew I was being punished and/or being taught a lesson for lying about our address. I couldn't afford the very expensive "public school" tuition they were requiring and requiring in 2 weeks from then nor did I want her to have to go back to the teacher who pretended to care. I was heartbroken. Anyhow, one of the other nurses I worked with that day had a sister who worked in the schools in the city we moved to (and worked with kids with special needs) and she got her on the phone with me. She helped me to find out which school would be best for Gabi and guided me through the process of how to get her in this school. I spent our entry meeting to the new school system in tears because I was sure my daughter was destined to be doomed and there was nothing I could do about it. During Gabi's 1st day, I met her new teacher and became more comfortable with where she was heading. Within weeks, I was thanking God for this switch! Gabi was doing wonderfully and her new teacher REALLY did care! It was different (in a good way). God had blessed me tremendously (not because I lied). I did however learn a lesson in the process. So it is possible that He is teaching me this lesson and going to give us blessings in the process.
Gabi has had this teacher every year since we moved here and will continue to have her until Gabi enters middle school. Gabi has made huge progress each and every year under her care. Thank you Ms. Elise for loving my daughter and providing her with a nurturing and caring environment to learn. I appreciate your time that you devote to her in and outside of the classroom. You are not only Gabi's teacher, but we also consider you our friend and extended family. Thank you.
Thank you also to the classroom aides. We love and appreciate you just as much!
Lord help us all when it's time to move Gabi to middle school. I'll be a quivering bundle of nerves. Ms. Elise, sure you don't want to try out middle school for a few years?
Monday, March 22, 2010
Many new or expecting parents get a grim prediction of their child or unborn child's future. I am here to tell you that children with Down syndrome do walk, talk, learn, run, jump, read, and many other things we are told they won't do. Gabi learned her first word at 7 months old and today she can carry on conversations and sing. She learned to walk at 2 years and 2 months old and now she can jump, run, and skip. Gabi was potty trained at 6 1/2 years old and this year she helped inspire her little brother to use the potty. I've seen videos of people with Down syndrome who drive and personally seen many, many of them in a work environment. While some of these milestones happen at a later age, they still happen. And ask any parent whose child has delays and they'll tell you the same, you just learn to appreciate and celebrate those milestones even more. And now, at 10 years old, I celebrate a new milestone that Gabi has achieved. Gabi has learned to READ!!!!
Thank you Ms. Elise and your wonderful group and to the wonderful educational websites out there like starfall.com that devote their sites to helping kids read!
Wednesday, March 3, 2010
It's that time of year again. It's time to take the pledge, but remember to abstain from the use of the word "retard" or "retarded" all year long (not just during or pleas for respect.) Visit http://r-word.org to take the pledge.
And read my archived post of when "The R-word Hits Home."