Eye appointments for Will

Will had his vision appointment at the University of Minnesota clinic on Friday. It was very thorough and had some good news as a result.
He does not need glasses because his eyes have good vision! The doctor said that he might need glasses in the future for nearsightedness, but nothing at present. His optic nerve is excellent and so is the health of his eyes. Some things that we knew are, that he cannot move his eyes from side to side so it's hard for him to track. She said that there isn't a surgery that can correct that since it is the nerves that control the muscles that are affected. He also crosses his eyes a lot and they still rotate upward, but she also would not do any surgery to correct the eye muscles at this time, she would like to see how they improve over the next months and check him again in September. Another good thing is that his eyes do have feeling, so he can feel wind or other things and blink to protect them. Although he doesn't blink as much as you or I, he'll use lubricant drops when he's sleeping to protect his eyes.
He's still trying to get better head control, so with his head bobbing, it's sometimes hard for him to also focus his eyes, but he's getting better. He saw the toys hanging on his car seat and started to giggle. He has a new exercise toy now to help him gain strength in his neck and more control of his arms.
On Wednesday we return to the U of MN clinic for an MRI of his head and an EMG, which tests the muscles in his face. It'll be done while he is sedated. After this week, we hope to have a break from hours in the car seat, although he's a trooper when it comes to travel!
The pictures are of Will's shoes, and a couple of him on his new toy. It was hot today here, so he's chilling without his shoes or clothes.

Another medical month for Will.

Here are a few pictures of Will. He is now 4 months old! I can't believe how big he is getting. He has doubled his wt. since he came to MN and you can see how tall he is becoming also. He can hold his head up for a little bit, but if he sits in his new bumbo chair, he needs some help with holding his head up for a while. He has been wearing his new shoes with the bar for a couple of weeks now and does well with it.


We have a busy few weeks ahead of us again. We have to go to Minneapolis tonight because he has an audiology test at the University tomorrow. I'm going to have to keep him up in the early morning so that he falls asleep during the testing. Not fun for either of us.
Then next week Friday we have to be at the University ped. clinic again to have an in-depth vision test, 4 hours long I'm told. I am quite eager to see how that turns out. He still cannot track with his eyes and they will often cross or roll up, but we see that when we are close to him, he does focus in on our faces. His last big testing for a while will be his MRI and EMG (testing the muscles in his face) under sedation, again at the University pediatric MRI center on May 26. I eager to hear the results of that also. It's his pediatric neurologist who has requested all these tests because with no facial movement, the nerves that control his facial muscles are close to the nerves for his hearing and vision. Still praying that this will all show that he has a bright future. He's definitely a "baby magnet", everywhere he goes he draws complete strangers in to 'talk' to him; medical staff and even the shoppers at the grocery store.

****Update****

Will had his hearing test and passed with flying colors!!! We are SO thankful that this is not another hurdle he will have to go over. Praise God!

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.

.

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?