May 15, 2011

A very busy four days....

This is going to be a long one....

Tuesday, May 10th
Ethan had his weekly visit with Julie, DT-Hearing, today. She usually comes on Mondays, but because of the Mother's Day weekend, she came today. Ethan showed of his amazing sitting abilities - sitting for over 30 minutes during therapy. He played with toys and even "talked" a bit for Julie. He has a knack of being very quiet for her .. LOL. She is excited because Ethan has been making more "happy" sounds recently. We are still working on the "b" sound. Sometimes I think he might be starting to vocalize it, but other times I'm not so sure. We also think he is starting to "pre-sign" as a few times it has appeared as he is trying to sign food or milk! We are very excited about this new development.

During our visit with Julie, Ethan's dietitian, Jen came for her visit. Ethan is growing very well. He weighed in at 19 pounds and 14 ounces and is nearly 29 inches long. He is still right at the 50th percentile and we couldn't be happier about it - he even looks a little chunky. :) We discussed his eating and spoke at length about his progress (or lack of) with solids and drinking from a cup. She suggested that I contact our Speech Language Pathologist about feeding therapy. So, I've called Betsy and she is going to talk to Dr. Smith. I guess in EI, SLPs can only work on feeding therapy if it is considered sensory. If it is considered medical they aren't allowed to.... but since Ethan's swallow study a few months ago was normal, it most likely isn't the mechanics as much as it is sensory - which seems to be just a part of PBDs. URG... makes me sad that everything has to be so hard for our little ones.

Wednesday, May 11th
In the morning Ethan had PT. He had had the last two weeks off from PT because his PT was out the country visiting family. Her last visit was the one with the OT in which it was declared that Ethan was officially sitting unassisted. Boy, did Ethan surprise her with how much stronger he has gotten in the last few weeks. She was thrilled to see him sitting for nearly 20 minutes! It is true that he still tumbles now and then, but we are so very proud of the progress he is making.

She tried to get him to work his tummy muscles in his Bumbo seat.....
but that wasn't very comfortable for the "little" guy. :) I am so proud of him! Remember, this is the baby that we were taking to the doctor's office every few days just to make sure he was gaining a few ounces a week!
Now that he is doing so well sitting, she is going to start working on weight bearing....

It was just for a few seconds, but he held himself up! She had to put him in the position, of course (he isn't doing much pushing up on his own). But I will admit - I cried when I saw him doing this! He's doing great at sitting, crawling will be next!

We also discussed his helmet. The PT said that if Ethan's head would have looked like it does now back in November that she wouldn't have recommended a helmet! YEAH! He is making a lot of improvement. We also talked about what we were going to do once he got his glasses, and she cleared us for going to just wearing the helmet at night once the glasses arrive! This is great! I am so excited that he has made enough progress that we can go to night only for the helmet. This is going to be so much better once he gets the glasses. I know that I wasn't sure how he was going to wear all of the stuff, especially in the heat. Ethan's been having such problems with rubbing anyway and now with it getting warmer.... Oh, let's just say we are VERY excited that Ethan will be wearing his hearing aids and glasses during the day and the helmet at night.

Thursday, May 12th
We left our house before 9am to begin the trip to Children's Hospital in St. Louis, MO - about a two and a half hour drive from Decatur (if the traffic isn't bad.) We were headed to go see Dr. Lueder, the pediatric opthomologist recommended by the eye specialists in Iowa City.

The visit with Dr. Lueder went well. Before we saw Dr. Lueder, another doctor saw Ethan. He was a younger doctor and was really great with Ethan. Our little man really showed off his vision skills and was getting a little frustrated that the doctor wouldn't let him play with the toys that he kept making Ethan track. Ethan's eyes were dilated and a full exam was conducted. The worst part of it was when Dr. Lueder held Ethan's eyes open to look at the retinas and optic nerve. Nothing was mentioned about his retina being abnormal, but he did mention that his optic nerve appeared small. From what I have read and heard from other parents, a small optic nerve is very common with PBDs.

Dr. Lueder wrote a prescription for eye glasses. The glasses will help correct Ethan's farsightedness and his astigmatism. He also is having us come back in August for two more tests, a SSVEP and a Flash VEP. These tests will read the responses Ethan brain has to visual stimulus. This will help us have a better picture of Ethan's overall vision.

So, we left Dr. Lueder'sMiraflex glasses for the little man. They have been ordered and she will ship them to us when they are done. Also, another huge blessing was that our insurance covered almost the entire cost of the glasses - thank you, Jesus!

Here is Ethan trying on the frames. This is the style and color we picked out for him.
The glasses are very flexible and will have a band that will help keep them on.

While we were walking in to St. John's a lady from Shriners Hospital called to let us know that they had received Ethan's application for services and that it would be reviewed and that they would contact us in a few weeks to let us know if he has been approved to become a patient. We are praying that they will accept Ethan. Not only does Shriners focus on helping kids with orthopedic issues, but they never turn away a family due to their inability to pay! This is great, because the majority of children with PBDs need extensive orthopedic support to help them walk (ankle-foot orthodics, braces, walkers, sometimes even surgery).

Afterwards, on our way home from STL we stopped to visit with the Maag family - their little girl, Kenna, who is 2 1/2 years old, has the same rare disorder that Ethan has. I had been able to meet Vicky once this past fall, but we were both very excited to get more time together and to have a play date with the kids. We had a blast! I am looking forward to getting together again this summer!





After a few final hugs we headed home. Visiting with Vicky, Kenna and Clancy (big sister), was great for Jeff and I. Kenna is doing so great and it helps give us hope for the future.

Friday, May 13th
I called the helmet guy in the morning and made an appointment for the afternoon. Ethan's helmet has just continued to cause him trouble. It seems like we have been back to get more of the inside taken out almost every other day.... Okay, its not been that often, but it feels like it. Andy removed more of the inside foam and then we talked about Ethan getting his glasses in the next week or so. He agreed with the PT that it would be okay to go to wearing the helmet just at night once Ethan's glasses arrive. Ethan's head shape has been improving, and he is concerned that trying to wear the helmet with the hearing aids and glasses will be too much and might cause additional rubbing/irritation. We want to avoid that, so we are very excited that once the glasses will arrive Ethan will wear his helmet at night time only! We are going to aim for him wearing it 10 to 12 hours each night (7pm-7am). No, Ethan doesn't sleep that long at night, but we'll just start a new bedtime routine - off with the glasses and hearing aids and on with the helmet.

This week is going to be another busy one....
Monday - Hearing
Tuesday - Audiologist appointment in Springfield
Wednesday - PT
Thursday - OT
Saturday - Ethan and I will travel to Mt. Vernon for my little sister's high school graduation. Jeff's little sister graduates from high school Sunday afternoon and we decided it would be best to divide and conquer.

Prayer Requests
Please pray for:
  • Strength, wisdom and comfort for all families impacted by PBDs.
  • The Lord to heal Ethan. That Ethan's mind and body will continue to develop and that he will be protected from the most devastating effects of these disorders.
  • The doctors and researchers that are studying PBDs. We pray that treatments will be found that will greatly improve the quality of life for all children impacted.
  • Jeff and I as we continue to strive to be the best parents we can be for our son. Pray that we will never stop thanking the Lord for the precious gift He has given us in Ethan. Pray that we will always seek to honor and please Him, looking to Him for guidance and direction.

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