Wednesday, August 19, 2009

Medical Update on Alex


Last week I took Alex to the doctor for a check-up and to mainly be referred up to Children's hospital. They were able to update his shot records and start the ball rolling for Alex to start seeing the necessary specialists up at Children's hospital. He had two shots that day and boy did he scream! Since it looked like he had gotten shots in his right leg before and I thought he had very little feeling in it because it is paralyzed to a certain point, I asked them to give the shots in that leg. Boy was I wrong--- Alex felt every bit of those two shots poor little guy. Thankfully, a sucker took his mind off of the pain right away and I was able to give him some Motrin in the car.

Just yesterday I took Dennis up to Children's hospital for a check-up with the plastic surgeon who also happens to share an office with the neuro-surgeon that Alex has been referred to see. When the office called to confirm the appointment for Dennis, I had asked them if the referral had come through for Alex yet so that maybe I could have both boys seen on the same day. They said no and so I figured I would be making two visits very close together.

Then surprise! When I got to the office for Dennis, they informed me that the referral came through and that the neuro-surgeon could Alex that same day after all. Praise the Lord!

Alex is thirty-two pounds-- a whopping four pounds heavier than Dennis. The neuro-surgeon said that Alex is most likely lumbar-sacral-- whatever the heck that means. I guess it refers to the location of the lesion. He let me know that he was referring Alex to the Spina Bifida clinic that is in the same Children's hospital (another praise) and that he has ordered up an MRI of his head and back, and an x-ray of his hips. He thinks Alex will walk with braces based on where the lesion is and the fact that he can stand and somewhat already walk--- yet another praise. At the Spina Bifida clinic Alex will see a Urologist and an Orthopaedist and other specialists to address his needs.

Alex for the most part seems to be taking everything in stride and his mobility is continuing to improve everyday despite having any medical intervention this far. It is encouraging to see he has such a will to be like his siblings.

I took him to have a TB test yesterday and I am pleased to see that there is no reaction like I thought there might be with most Eastern European children being vaccinated with the BCG vaccine. Dennis seems clear too.

If I had to share the hardest thing there is in caring for a child with Spina Bifida, I would have to say it is the bladder and bowel incontinence. I have been reading up on these things and have joined a few support groups--- and a few wonderful parents of children with SB have kind of taken me under their wings. With Alex being four years old already and about to start pre-school, I am trying to get Alex on a bowel management program where he can get used to going to the bathroom at a certain time everyday. Though he is more than willing to try-- we have not had much success yet--- though it is still very early in the game. We will just have to keep working on it together.

Other than what I have shared, Alex is a normal, healthy, bright four year old boy and his smile and laugh brightens up the room.

He is a joy to have around.

11 comments:

Chelley said...

That is some great updates form the docs!! I hope it keeps going that way!! do you have to travel far for these appoiments?

ukraine09 said...

I'm so happy to hear Alex is doing so well. Great to hear about the Dr. visits and I will pray that everything else is under control soon.

I am so, so happy to finally see Alex home. It was wonderful to follow your journey to him and now I can't wait to see him grow up!

Jaime

DysFUNctional Mom said...

It's amazing to think of how much you & your family changed that little boy's life! xoxo

Taylor said...

Thaat is so cool how God worked out all of your doctor's appointments and how they are in the same place. He is adorable!!!

Carey and Norman said...

So glad that your medical appointment and visit was productive and informative. It sounds like Alex is doing very well. I agree that siblings make a huge difference in the will of a child.

Glad you are home and things are going very well for you!

Kathy C. said...

Alex seems like such a blessing.

MoonDog said...

you said he is healthy and happy but you forgot the most important thing he is. LOVED! HE IS LOVED! and that makes ME so happy!

Jasmine said...

Hi Christine,

So glad to hear how well Alex is doing! I have four siblings with Spina Bifida (including one who passed away a year ago September)
Sacral/Lumbar does refer to where on the spine the opening occurred. Sacral is the mildest form, Lumbar the next. If his is Sacral/Lumbar he has mild to moderate SB. Because Sacral is the area that controls bladder and bowel, no matter how mild that is always the place that will be hit first. It can be hard to get used to at first but soon becomes a piece of everyday life. Alex will just handle those needs differently. He might even be able to do his own catherizaions one day on his own. PT and OT is another super important thing! But siblings can sort of be a kid's own little therapists by just emulating things for Alex to try to do. If you have any questions feel free to email me: fleur.in.bloom@gmail.com Because of my siblings I've lived with Spina Bifida for twenty years. :)
Also another great resource is Joni and Friends. Check out their website, especially their family retreats for families affected by disabilities. They are awesome!!!

Blessings,
Jasmine

Erin said...

As Jasmine said, lumbosacral is a mild to moderate SB. It refers to a region of the low back, basically at the bottom of the curve of the back. And just because he has a lesion there doesn't mean that he'll have pain there or anything else....an MRI will be the most helpful in determining specifically where the lesion is, in addition to how extensive it is. If you need any more help translating all the medical jibberish, let me know. I'm glad Alex is doing so well!

annef said...

I'm thrilled to stumble across your blog! We are in the process of adopting a 7-yr-old with spina bifida, internationally. I am wondering about how to manage the long plane ride with a child who is not yet on a bowel and bladder routine. Any suggestions? thanks so much and God bless you.

Violet said...

It sounds like Alex is doing just splendid! Looks like it too. He is so cute and fits in just perfectly with your other children!

I cared for a little boy who had severe cerebral palsy, and was incontinent. They didn't think to put him on a bowel regimine until his younger brother started potty training. He would get agitated when they would talk to his little brother about using the potty. Eventually they came to the conclusion to work with him on his potty training. He is 10 years old now, and while he still needs protection for urination, he is on a very reliable bowel regimine. If your at all interested in the technique his family used, I'd be more than willing to share it.