Caleb and his buddy Bryce were picked for a photo shoot at our local children's hospital. They are going to use the photos on their website and in print. I'm excited that Caleb got to be a part of it. The pics came out super cute so I had to share.
Sunday, March 30, 2014
Monday, July 01, 2013
Caleb had a MRI (brain and spine) last Friday. As expected he did fantastic. Such a trooper. He handles this stuff way better than I do. I went back with him to pre-anesthesia to watch as he went to sleep. This is not the first time I have seen him drift off to sleep and I suspect it won't be the last. I don't like it. The MRI lasted about 2 hours.
(enjoying a post-anesthesia popsicle)
I got a call today with the results of the MRI. Basically things look "stable", meaning there is nothing new to report. I am relieved and frustrated by this news. I am relieved that there isn't something major going on that would require more surgery. I'm frustrated because I still don't have answers. I still don't know why TC recovery has been so hard for him. I still don't know why we are 15 months out from surgery and he still hasn't gained back the function he had prior. Ultimately I'm thankful for a good MRI report...just wish I had more answers. Maybe I never will. Maybe I just need to be okay with where we are right now. It isn't what I would have wanted for him. I hate that this happened but it happened nonetheless. And the truth is, where we are right now isn't so bad. No, he can't walk right now and maybe he never will but I learned a long time ago that walking/not walking isn't a predictor of a good life. So we press forward, we keep climbing our mountain. I'll continue to be Caleb's number one cheerleader.
Thursday, June 27, 2013
Last week Caleb had a neurosurgery appointment, just a follow-up to see how he is doing. The neurosurgeon was surprised to see how weak Caleb's legs are 15 months after tethered cord surgery, especially his right leg. I asked the doctor how common it was for a child who was ambulatory prior to TC surgery to lose all function and not gain it back. He said it was very rare. Which is why I think he is so concerned about Caleb's lack of progress. He wants to make sure there is nothing else going on, nothing else that could be causing or contributing to Caleb's lack of function. So, he ordered a full MRI (head and spine), as soon as possible. Caleb has the MRI tomorrow morning. Caleb will be under anesthesia since the scan takes about 2 hours. Please pray for Caleb, that he wouldn't be anxious or fearful. He always does great with anesthesia and is such a trooper so I don't expect any surprises tomorrow...but prayer is always appreciated. I don't know what the MRI will show. I'm trying not to play the "what if" game right now because my mind goes to some pretty bad places.
Tuesday, January 01, 2013
I thought it would be fun to do a quick (yeah right!) summary of the past year.
The year started with some fantastic family photos. Seriously, just gorgeous.
We took Caleb to his first wheelchair basketball practice...he was instantly hooked.
(This was a busy month, a lot happened during this time.)
We took a trip to San Antonio.
Benjamin said "good bye" to his burp cloth.
And we learned that Caleb's spinal cord was tethered and surgery was scheduled.
Caleb had tethered cord surgery.
(That pretty much consumed April)
Caleb got to meet Wheelz. Very cool.
And I had a "mommy tantrum".
It was the summer of crafting at our house!
It was also the summer of the Slip'n Slide!
I ended the month with some Deja Vu
I went to the SB Conference. It was amazing! These women are amazing!
We got ready for the Olympics.
Caleb turned 7....I'm still trying to wrap my brain around that!
Caleb started 1st grade.
With your help we raised $1335 for the SBANT!
Benjamin got up close and personal with a fire truck.
Benjamin started preschool, just 2 days a week.
(an exceptionally crazy month)
The month started off with a "Rough Few Days"...and that's putting it lightly.
Benjamin photo shoot at the park.
We celebrated a Shuntiversary.
Awesome Cardboard Creations.
Pumpkin Patch fun.
Caleb had his first basketball tournament.
Our ADVENTure began.
A lesson in "Sibling Love"?
My baby turned 4. Unbearable to believe he is already 4.
I think that about sums up our year, well the highlights anyway. Thanks for sharing this journey with us!
Sunday, April 15, 2012
A few weeks ago I posted about our tiny baby caterpillars and how the boys were anxiously awaiting to see them transform into butterflies. The caterpillars took about 10-12 days before they were full grown. It was amazing to see how quickly these caterpillars grew. When they were ready they climbed to the top of the container and hung upside down. Within hours they have a hard shell around them, also known as a chrysalis. So weird. Once all the caterpillars had formed their chrysalis, I moved them into the butterfly garden.
And then we waited. And waited. It takes another 10 days or so for the butterfly to emerge out of the chrysalis. We had 4 butterflies total, 2 of them emerged on Monday (we let them go on Wednesday) and the other 2 emerged on Friday (we let them go today).
The boys loved watching the butterflies.
I gave the butterflies fresh orange slices twice a day.
The butterflies were pretty eager to get some fresh air. I tried to let the boys hold them but the butterflies were ready to fly free.
Caleb did get to hold a rollie-pollie. :)
This kid just has mischief written all over him. I love that little stinker.
Today I noticed 2 butterflies hanging out on these flowers. I can't be certain that they are the same butterflies we let go, but they sure look like it. I like to think our butterflies are going to hang around our house to visit.
Quick picture with my big boy.
My sweet Caleb has been so sick today. He woke up with a 102.7 fever and very cloudy urine. I had been worried about a possible UTI since he was in the hospital for his tethered cord surgery. They actually checked it before we were discharged and it came back clean. I have just been pushing fluids all week, hoping that it was nothing. He never had a fever so I assumed that he didn't have an infection. Well, he got sick fast today. His fever was over 105 degrees by lunch time. Over 105 degree temperature makes this momma start to freak out a bit. We took him to the ER because we were pretty sure he has a kidney infection. We were right. Luckily, they just gave him a heavy shot of rocephin and sent him home. As long as he doesn't get worse or start vomiting then we can avoid a hospital stay. He did throw up once tonight after dinner but it was minimal. He is burning up though, poor baby. I hate kidney infections. They make him so sick. He was just starting to get around more since his surgery and now he is down and out with this infection. Kid just can't catch a break. Hopefully the rocephin will take the edge off the infection and we can avoid going back to the hospital. His previous kidney infections have landed him in the hospital for 3 days. I really don't want to go back to the hospital.
Caleb's PT came out this week. After doing a quick re-evaluation, we decided that Caleb needs PT 3 times a week for the next 3 months, or until he gains back all of the function he lost after the surgery. He is crawling much better but he still can't stand up at all and walking is obviously out of the question right now. Ms. Vicki seems optimistic that Caleb will make progress quickly. I am going to keep him home from school this next week and then see how he is doing the following week. I will probably start him back with a half day here and there to see how he does He misses school so much. He had a couple of his classmates visit him over the weekend which was such a blessing. His wonderful teacher came to see him a couple of times this past week and she brought letters and pictures from all of his classmates. They were so sweet. I will definitely tuck those away for safe keeping.
Thursday, April 05, 2012
Caleb was allowed to sit up a bit today. The neurosurgeon said to let him sit up off and on throughout the day but to make sure he goes back to laying flat in between. The doctor is still pleased with his progress and the incision. Things are on track for us to be home by the weekend. Caleb will have to take it easy for quite some time. He will likely miss the next 3 weeks of school and even when he does feel up to going back, it will have to be for a half day here and there. It will take some time to get him back to normal activity so we will have to gradually increase his activity.
Caleb was so excited to finally get out of the hospital room. We took him for a short wagon ride down to the playroom.
The playroom had a giant screen for video games. Caleb was in heaven. We had to limit his time because we didn't want him to overdue it. After about 30 minutes, we took him back to the room so he could lay down.
Luckily, he had his buddy Bryce to keep him occupied for a couple of hours.
I just had to share this. One of Caleb's classmates made this "get well" card. How cute is it that he drew a picture of Caleb in his wheelchair! And with spiky hair and glasses! So cute.
Caleb enjoying some pizza for dinner.
The physical therapist is going to come by in the morning to work with Caleb. I think the plan is to see if Caleb is able to stand or take any steps. I'm not sure what to expect. I guess it is worth a try but I know that it can take weeks, even months, for him to regain the strength he had. We'll see how he does.
Thanks for all the prayers and comments. They mean a lot.