We survived the entire summer with the halo on Elliott. He got about 25 degree improvement on his spine, but boy did he deserve that improvement. Putting a kid like Elliott who has finally found freedom and started moving and discovering in a wheelchair that he is suspended in and can't move independently in was TORTURE. We saw a different side of Elliott, he lost a lot of light in his pretty brown eyes and honestly just seemed depressed.
The beginning of August he was scheduled to have the halo removed and have growing rods called VEPTR placed in his spine. This is a system that requires two surgeries per year to adjust the length as he grows. They were supposed to hook onto his ribs, but when they went in for the surgery they discovered that his ribs are far too thin and frail to bear that kind of weight so they had to change course and place them on the spine itself. Initially we were told that he would probably be able to go to the normal floor and go home in two or three days. They also said that he would be up walking the next day.....um.....no! He ended up in ICU for about three days where he was given an ND tube and a blood transfusion (For those of you who don't know an ND tube is a nasoduodenum tube which surpasses the stomach and supplies food directly into the top of the intestine) we spent almost another week in the hospital and eventually got to go home after a long week with lots of hurdles. He still was only walking supported for a few minutes at a time and would cry the entire time. He's been home a couple of weeks (including a day in the ER with pneumonia) on a feeding tube and oxygen and is only just now starting to show an interest in moving independently. It will be a long road to recovery, but we know this was truly his best chance for his lungs to develop the very best they possibly can. His spine looks SO much straighter - it is absolutely amazing.
We will be back in Denver at the Children's hospital for a follow up in a few weeks and he will likely be having at least one more surgery before the end of the year for feeding and GI issues.
|Waiting with Daddy to get his halo taken off|
|On his way back to surgery - feeling good with the help of some meds.|
|A week in and starting to smile again|
|Not happy about having to sit up|
|Finally up and walking and not even crying!|
|Saying goodbye to his favorite purple cow at the hospital - also the only purple cow|
|Asleep on the long ride home|
|In the ER two days later with Pneumonia :P|
Lance is on a diet! Ok, so not a real diet, but yes his therapist and doctors did say he needed to cut back calories and slow down on the weight gain. LOL (Who would have thought?) With kids who have a hard time controlling muscle movement in the first place the extra weight can be especially detrimental, so it isn't that Lance is overweight or unhealthy, he just has to maintain a trimmer physique to encourage as much voluntary movement as possible.
He is having a couple surgical procedures done tomorrow as well as botox injections to help keep his muscles relaxed and again help him with movement and tone. He is also developing scoliosis in part because of his dislocated hip. We were really hoping to get another year before we needed to have the hip surgery done, but it is looking eminent - like in the next few months. :/ This is a pretty major surgery and again a long recovery time.
In the last 9 months since the boys came home, I have learned about more things than I even knew existed. I have been stretched and tried and learned a lot of things about myself that I never realized - it hasn't always been pretty. I won't lie, this road is ROUGH, it's HARD, it's frustrating, and sometimes disheartening. I feel and see my weaknesses every day. I praise God though that when I am weak then I am strong because some days that must mean I am VERY strong. At the end of the day though, I can say that I love my children and my husband more than life itself. I am honored that God called me to this difficult road and I can't wait to find a little more of His strength at the in the midst of each struggle.
|Lance is rocking his plethera of equipment: a back brace, hand braces, a wedge for his hips, and bananas to help his head stability|
|So naughty and demanding attention, but always happy when he gets it!|
|Um, too cool for school?|
|Basking in the sun with daddy|
|Cuddling with mom|
|So handsome and yes chubby little cheekers!|