Fun Photos

Here are some cute photos of Will from the past week or so.

Will with his host sister and another COTP graduate (Chelda) on Easter.

Chelda holding Will!

Will in his new chair (after surgery).

Will in an 81 year old pram with host sister.

Will going for the first spring walk in 81 year old pram.

Will giving his host sister the "peace"sign in the car.

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Surgery update

Will had surgery on Thurs., April 1st. It was a simple procedure to cut the Achilles tendon in both ankles, then cast his feet and legs in an outward rotation for 3 weeks. His tendons will grow back longer into his heels within 3 weeks and then he can have these hard casts removed and begin wearing special shoes with a bar. Because he was under general anesthesia and the doctors wanted to watch him closely, he stayed overnight at Shriners. He didn't seem to mind. He had some great rides in the wagon outside and listened to his new crib toy play music. He's been doing well ever since. He had rolled over once before getting the heavier plaster casts on, and he has even rolled over since being home with his heavy casts on! He is so strong!
On the 13th of April he gets to see the pediatric neurologist at the U of MN for an evaluation. I am eager to hear what they have to say about his development and lack of facial movement, etc.
He is such a good baby and a joy to have with us.

Will and his host sister after his 4th castings.

Will after his 5th castings and just before surgery.

In the hospital just before surgery.

With host mom just before surgery.

In the hospital just after surgery.

In the hospital just after surgery with his new crib toy.

Castings update

We'll have Will's 5th casting and a preop physical on Thursday. He'll have surgery next week, April 1st, to clip his Achilles tendon, then put on hard casts for 3 weeks. He'll have this done under general anesthesia, so we'll be in the hospital for several hours.
The orthopedic doctor is making a referral for Will to see the genetic specialist at the U of MN to check into possible Moebius Syndrome.
They were also able to weigh Will when his casts came off and he is over 11lbs!

Look how well his feet are doing!

After the 2nd castings

With 3 set of castings onAfter the 3rd set of castings came offWith 4th set of castings on.

Will at 2 months old

Update from Neurologist

The doctor called and left a message that said that Will does NOT have seizures! That is according to the pediatric neurologist in Minneapolis. Since he had to leave a message, we weren't able to ask many questions, but hope to soon.
He still has some unusual "movements" and something we will have to keep our eye on and try figure out more.
It is so wonderful to hear this information. Having seizures would be so disappointing and hard on the child and their families. Its also nice to avoid those medications as well.

We'll get his casts changed, again, today, then next week he should have his Achilles tendon clipped, then casted for 3 weeks rather than just one. He'll have possible 2 more cast changes, then he'll have to wear special shoes with a bar between them. The bar moves up and down so that babies can't pull one foot out of the shoe, but the bar prevents their feet from moving medially (closer together). He'll have to wear it 23 hrs a day for 3 months, then every night for 3 years. The follow-up with the shoes and bar system is responsible for 95% of the success according to the orthopedic doctor. These doctors/nurses have been doing a study on this method for quite some time (Will is a part of it also) and are finding adults without any other neuro issues, who've had this done do not have any limitations for walking or even running marathons, whereas the surgery that is still being done some places, the adults have to have desk jobs or limited type of mobility. Just pray we can figure out what is going on with Will neurologically. Its wonderful there are no seizures, but it would be nice to get him figured out.

Will on the move and 3rd appointment.

Will spent a night with another family for some respite for his host family. Below are some photos of him with his "respite" family.
Will is now on his way back to the cities (with his host family) for his 3rd casting change tomorrow. Hopefully they will see more improvement and he is in minimal pain when the 3rd casts are placed. Last week was harder for him than his 1st castings as they continue to keep rotating his feet down and is a bit more painful.
We are also waiting to hear back from the pediatric neurologist.

How can you resist this face?

EEG this morning

Will had a good day in spite of being sleep deprived from 4:00 am until 7:00 am. He didn't seem to mind the EEG at all. The sleep deprivation is so he will fall asleep during the EEG, and he did while drinking his bottle. It now goes to the pediatric neurologist for interpretation and hopefully we will get some answers and possible treatment options soon.

Will's second casting appointment

On Thursday, March 4, Will had his first casts removed and the 2nd casting done. The doctors are pleased with how it is going. He does have congenital club feet and not positional club feet. They will change his casts every week and probably do a minor surgical procedure after the 4th casting. This involves clipping the Achilles tendon in both feet, in children this will grow back to the right length. They will do it under anesthesia, so it won't be uncomfortable for him.

I believe that Will is having infantile spasms, a type of seizure, about once a day. We have an appointment for him to have an EEG (Electroencephalogram) early Monday morning. Those results will be sent to the Minnesota Epilepsy Group in St. Paul and we will then discuss what would be the best treatment for this. He will be getting some of the best care both for his feet and his neurological issues.

He continues to grow like a weed and is doing very well with taking his bottle. Everywhere we go, he tends to be the center of attention.

Will's feet after the first weeks casts were removed. Will's second casts put on.Will's second casts put on.