More appointments for Will

Will's been a trooper when it comes it traveling and different situations. We spent another 14 hours on the road going to and from Rochester last week and this week. He does great and the information we find out from such a great clinic as Mayo is worth it all.


His upper GI x-ray last week showed that that part of his system is all normal. Since he had had such violent reactions with vomiting and diarrhea to baby rice cereal the doctors wanted to look into every possibility of what could be going on. They drew blood to check for liver function, metabolic disorders and immune reactions. Those all came back good. Then this week the allergist/immune specialist talked about starting him on fruits and veg. in a set pattern with a lot of time before introducing a new food. And he is not to get any rice cereal again! It's possible he could outgrow that in a couple of years, but it's off his food list. And we'll see how the other foods go. She said that fruits and veggies are the least likely to cause problems. Now we'll see.
He also met with an occupational therapist and had a swallowing study with thin and thickened liquid and baby applesauce (all barium). He hated waiting to eat, but he was so hungry that he took the nasty stuff without hesitation. The thin liquid is a little harder for him to get down. It gets into the little pocket behind his epiglottis and then he swallows it in spurts. The thicker liquid goes down smoother, but is harder work for him to swallow. His mouth works with top and bottom pressure, but no pressure from the sides due to paralysis of those muscles and a more limited movement of his tongue. The food was harder for him to manipulate to the back of the throat, but it went down fine. The good news is that he is not aspirating anything!! And he's still a "go" for bottle feeding. It's going to be a challenge for him to eat regular baby food, but I think he'll manage. The OT said that we will need to watch him closer when he starts eating chunky food, like cheerios, that he doesn't pocket them in his cheeks without knowing it.


We will be contacting physical therapists from our area this week to see about getting exercises for his neck muscles and upper body. This will also help the internal muscles of his esophagus and throat.


At the end of next week we will be back at Mayo to meet with a pediatric neurologist....and so his adventures continue.

Can you get any cuter than this?

Its been a long time since we updated this blog. Here are a few photos for now. He is doing so well and growing like a weed. How adorable is he?!

With new puppy

Sitting so big and checking out his hands.

MRI and EMG tests done

Will had his MRI and EMG of his face (testing nerve conduction to muscles with little electric impulses). He was sedated with IV meds. They had a hard time finding a vein, so we had to wait for the IV team to get it started. He did really well!
The ped. neurologist did the EMG, so we talked quite a bit when that was done. He'll review the MRI more and call me probably next week. He said it really does appear to be Moebius syndrome. There is a website specific for Moebius syndrome. It has good information and stories about others with this. Most children/people with this are intelligent and able to do everything that others do in life. With his vision being good (possible glasses for normal type nearsightedness later in life), his hearing good and being able to suck, he is at an advantage. He does have weakness in his neck area, so we are working to get him to be able to hold his head up better. He uses both hands and is focusing more; he reached both hands to grab a soft toy the other day. He won't be able to ever move his eyes side to side, smile, frown or make different expressions with his face. He does have feeling in his face even though he can't move it.
All the doctors that have seen him are very impressed with how well his feet look. He should have no problems with walking or running. He will need PT and OT and possibly speech to make sure he can talk well and gain strength and coordination in his upper body. Although his arm muscles already can hold him up. All the doctors note that he is stronger than most babies. We hope those movements get more and more coordinated and I believe they are.
His jaw can move and so can his tongue, so we hope eating and speech will be good. His weight is now 15 lbs 3 oz and 24 inches long!! The doctors want me to try him on rice cereal. I'm eager to see how he responds to that and if he can swallow it OK.

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.

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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.