Home Sweet Home

Benjamin was napping peacefully at home… until his sisters arrived. I see two little girls who are extremely excited their little brother is finally home.

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Miracle to Milestone

Benjamin continued to amaze us yesterday as he became more alert after surgery. His eyes continued to improve, his tongue fasciculations (tremors) stopped, and he made one very big milestone. Over the past month, I have worked very hard trying to find toys that were of a perfect size and weight for Benjamin. Every toy either seemed too big or too heavy for him to pick up. Yesterday, I placed one of his toys in his right hand. I turned my head for a second, and when I turned back around, Benjamin was bringing up his toy off the bed. He didn’t just do this once or twice, he bicep curled that toy multiple times. I yelled at KC, and grabbed my camera. My excitement exceeds what you would expect to feel to see your child walk or crawl for the first time since deep down we were not really sure if he would ever be able to pick up a toy.

I sit and stare at him wanting to wake him up, so anxious of what today might hold.

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From Expectations To Reality

Benjamin is sleeping peacefully, and all I can do is stare at him. He is absolutely beautiful, and such a physical representation of how wonderful our God truly is. Like I said previously, I did not have unrealistic expectations, but I knew we would see improvements, just didn’t expect them this quick. Benjamin opened his eyes briefly before being whisked away to CT scan, and I immediately noticed improvement in HIS left eye strabismus (turn out). Usually, to make Benjamin bring his left eye in towards his nose, I have to cover the right eye. Today, when Benjamin opened his eyes, they were both looking right at me. It’s obvious that they are not perfectly aligned, but there is a definite improvement. I know it is not very Christian like, but I can’t wait to see “the doctor” that told me he wasn’t sure if there would be any changes. I might get his email and send updates. Maybe that is going a little far. 🙂

Thanks for all the prayers and positive thoughts. We couldn’t (or wouldn’t want to) make this journey without our friends and family.

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Optimism

Consents are signed, Benjamin is ready, and the surgery is in the books for 9:30 tomorrow. The past 24 hours have been relatively uneventful expect for a little grimacing and crying when changing the position of his head. (And the Saints won!) Last night when we turned his head from the right to the left, Benjamin cried hard enough to make a little sound. After some Tylenol, he fell asleep and slept the rest of the night except for a bath at 4 am. Interesting time I know.

I am very optimistic that after the shunt placement, Benjamin will continue on his path of Miracles and Milestones, and we will look back at this like a small bump in the road. I was told today that after the surgery, he (a doctor) wasn’t sure how much more movement Benjamin would gain. (another comment saying all this is from the myopathy) Well, once again sir, thanks for your input, but I am going to ignore that comment that really didn’t need to be made at all. I believe they think that I will expect Benjamin to be doing cartwheels on Tuesday. I do not have ridiculous expectations, but I could imagine the amount of fluid in his head would affect his development. However, if Benjamin does perform a cartwheel, that doctor will not be the first person I will call. 🙂

Please say extra prayers tonight and tomorrow for Benjamin and his physicians. The surgery should take about an hour, and during that time, I will be loading up on chocolate and coffee. Stress Eating. God bless Benjamin.

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MRI Results. :(

MRI last night looked a little worse than expected. Not only does Benjamin have fluid in the two main ventricles, he has fluid in every ventricle in his brain (communicating hydrocephalus). The MRI also showed significant white matter loss diffusely (damage in the brain itself), but I have faith that the placement of a shunt will allow the brain room to grow and heal.

Benjamin continues to be happy and smiling occasionally, but definitely seems tired. He is showing some signs of the hydrocephalus mainly tongue fasciculations (tremors), increased strabismus of left eye, and less use of his right arm when compared to the left.

It is hard not to blame myself for not figuring this out earlier, but our Pulmonologist was impressed I was able to identify such small changes at all. Many of the signs of hydrocephalus can be easily masked by Benjamin’s diagnosis.

The current plan is to try to wait til Monday to place the shunt so that all teams are here (pediatric surgery, anesthesia, along with neurosurgery). Just in case something happens overnight or tomorrow morning, Benjamin will be NPO (no food) starting at 2am.

Please keep praying for our Little Buddy.

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First PICU Admit

Mom is officially not crazy! Benjamin’s head size yesterday measured significantly larger than his previous measurement and he is officially above all the percentage lines >95 percent. An ultrasound today showed “large” ventricles in the brain, which means Benjamin’s brain (for a reason unknown at this time) is not draining the fluid as it should and this causes his head to grow larger since the skull’s growth plates are not fused yet.

Due to the rapid increase in size, Benjamin was admitted to the PICU at Ochsner. His head grew over a centimeter since yesterday. Sounds like some scary stuff, but I believe all of this can be corrected. We will continue to remain positive until we are given reason to be otherwise. Every now and then I can work a little smile out of him even though he must feel pretty yucky. Please keep Benjamin in your prayers.

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Too Much or Too Little?

How do you know when you are making the right choices for your children?  I don’t question this with just Benjamin, but my decisions for Benjamin have little research and I don’t have many people to learn from their experiences.  Benjamin sees five therapists, six physicians, he is on multiple supplements to increase strength and energy, and follows up with activities at home.  But is it enough?  Is it too much?  Is there something I am missing?  Are the supplements too much or too little?  I  completely accept Benjamin’s diagnosis, but considering Benjamin is one of the most severe children with his diagnosis that are still living, I can’t help but think I am doing something wrong.  Maybe he is still alive because of what we do.  I have to continue to think this way.
Since the week after Benjamin was discharged from the hospital in August, he has plateaued some with his physical activity including swallowing and smiling.  Before admit, Benjamin’s therapists were making comments about how every week he looks better and stronger, but now I feel like there are a lot of comments about Benjamin being tired or disinterested.  Maybe so, but there must be something I can do.  If I continue to try to find toys to grasp his attention, we will start to look like Toys-R-Us.  Over the past month, Benjamin has had a slightly fuller fontanelle (soft spot), an increase in head size, and overall less movement.  When taken initially to pediatrician, tests were run, changes were made in blood pressure medication, but there were no significant changes in activity.  Another doctor was brought in to see Benjamin and she asked me, “So you are concerned because he his fussy?”  No ma’am, do you think fussiness would worry me at this point?  So tomorrow, we will return back to the pediatrician for further assessment.   They may think I am crazy, but I am not leaving without a few tests run.

Something that is progressing well is the length of Benjamin’s hair.  Yesterday, Benjamin had his second hair cut… on his 8 month birthday.  Is it silly that I am already mentally planning for his one-year old birthday party?  Of course not, it’s going to be a big one.  🙂

 

Needing a Sign

After a little bit of a rough day yesterday, I laid in the bed and prayed. I have read a few motivational books since Benjamin has been born, and it seems like all of them were stories where people had signs from God that helped them move along. I believe whole heartily in God, Jesus, and everything he represents, but as I thanked him last night for everything he has done for us, I selfishly asked for a sign… A sound, a vision, a touch to let me know he was with me and that I was making the right choices for Benjamin and our family. While praying, I fell asleep before my ending sign of the cross.

I woke up this morning like every other day. Dressed Lennon for school, fed the girls, and waited for Benjamin’s nurse. Isla, Benjamin, his nurse, and I traveled to Tulane where Benjamin performed much better today, with a little help from a bit of applesauce. We then made a special trip to Toys-r-us to buy Benjamin some new toys (he has been a little difficult to motivate) and Isla a surprise for potty-training. (no accidents today) From there, we went to the park…Benjamin’s first time. 🙂 I played with Isla sliding down slides and chasing her across the grass. To be honest, I have always just watched the girls at the park, and not really been too involved. I stopped for a moment to watch Isla slide (I couldn’t fit in this one 🙂 ), and I started to swing as high as I could… I am not sure of the last time I was in a swing. As I swung higher, grinning from ear to ear, I realized this was my sign. The entire day was a sign. It just took a child-like moment to realize this. God had helped me get over the previous day, allowed me to enjoy and appreciate every moment of today, and reminded me that through the storm comes the sun. God is always here for us, he is always reminding us, we just have to be open for his messages.

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