Langston Family Blog

His neurologist, geneticist, and pediatrician decided that we needed to move forward with his muscle biopsy and MRI. The genetic testing did not turn up anything real definitive so they feel as though the muscle biopsy will. He is improving greatly with PT and that is a great sign! They are doing the MRI and biopsy on June 24th. He has to go under general anesthesia so they are doing the two procedures together - otherwise, he would need anesthesia twice. We obviously opted to wait until June but do them both together. This has been a VERY long and VERY stressful road and it is finally coming to a close. We can still use ALL the prayers that we can get. Please remember Walker in your prayers. He is so sweet and happy and we are praying that this all turns out to be a benign case of hypotonia. Thanks for all the encouragement and support you all have given us!

We had to take a picture of Walker shoving almost his whole fist in his mouth. We started giving him a tiny amount of baby food (he turns 4 months this week) and he loved it. In between bites of bananas, he was shoving his fist in his mouth.

The last picture is of him today - his first time swimming! I love the suit. (If you wonder why his chest is reddened, we had just pulled off this tape that the physical therapist puts on him to strengthen his muscles. It always turns red right after we take it off)

 

 

 

 

Friday was Gavin's last half-day of kindergarten. They had a little ceremony at 11:30 am that was really sweet. Everybody sits in the bleachers and then the seniors move out of the bleachers and all the classes move over to their new grades. It was really cute - I cried of course!!! I cannot believe that he is a first grader now :)

The Computer Lab in the IMC

My mom had "work days" at MCA once the girls were out so we went to visit one day. She also wanted to show off Walker. I was amazed at how much the school has changed. I mean, it has been 10 years! The place looks great. It never fails that the memories just flood back when you go back there - 4 of the best years of my life. I love Mount Carmel :)

He looks so grown up.....

This was Gavin's "big" present this year - he loved it! He loves to take pictures so we though this was a great idea. He went nuts and took a million pictures the afternoon that he got it. He got it early because he picked it out himself during Birthday Week. Maybe I have an aspiring photographer on my hands?!

This was when they were doing his EKG. He was such a trooper! He smiled and kicked the whole time. I did not realize that all of those wires would fit on his little chest!!

We saw the cardiologist today. He did an EKG and an echocardiogram and, of course, examined him. Everything turned out fine - his heart is completely normal in form and function! Thank God. This is one less worry. Now, we just wait on the genetic test results and then we should be done with all of the testing!

Thanks for all of the prayers and concern :)

I keep getting stories that come back to me that are not accurate so I decided to set the record straight:

So, most of you all know this information already but Walker was diagnosed with hypotonia. This basically means that he has some muscle weakness - it is mostly his head control and upper body. Unless you are a medical professional, you would not even notice. He is doing just fine - he is perfectly healthy and happy...but we have had to go through some testing to ensure that this is a benign case. There are thousands of things that can cause this.

We saw neurology who recommended physical therapy and a CT scan of his brain. His CT scan was completely normal. He started physical therapy with the best PT in the area and he has responded VERY well and has gotten much stronger. He continues to get stronger every week!

Per his pediatrician's recommendation, we have also seen a geneticist that ran a bunch of tests to see if there was anything in his blood - metabolic disorders, etc. He could not find anything on exam that showed any signs of anything (great sign for a geneticist not to find anything!). They took 8 adult-sized tubes of blood from him (he did not wake up for about 9 hours after the blood was drawn - poor baby). So far, all of his labs have come back normal (Thank God!). We are still waiting for the rest to come back. They typically take 4-6 weeks to be resulted. I have no idea why it takes so long in 2009!!!

Tomorrow, we have to see cardiology to ensure that his heart is fine since his heart is a muscle. His pediatrician and all of the specialists feel that he is fine so this is all mostly to rule out everything.

Again, Walker is happy and healthy and does not even realize that he has this. He is meeting all of his milestones and is doing fantastic! His muscles should strengthen over time and eventually we will hopefully forget that he ever had this diagnosis! :)

Please pray for him as we are starting to get his test results back. We are praying for all to be normal!

Happy Mother's Day to all of you moms out there! We had a great day. We had lunch at Serrano's and then visited both grandparents. It was a nice afternoon. I know how very blessed I am to have two wonderful, happy, healthy children! I thank God every day for them and all of the wonderful blessings in my life - especially my own mom. Happy Mother's Day, Mom! I am also blessed to have a wonderful mother-in-law. Happy Mother's Day to you, Mrs. Carol. Thanks to both of you for all that you do and all that you are! We love you!

Yesterday, Gavin and I volunteered to work at the Country Day fair. I did not manage to get any pics of the fair but I did get one of our name as a sponsor. We feel so grown up sponsoring a booth at our son's fair!!

Walker is RARELY in a cranky mood but this is his pouty face when he gets mad - still precious even when he is upset :)

I think this is Jesus - you never know who you'll run into at Jazz Fest!

Marcia Ball

Gavin's co-worker, Paul - the one with the tan guitar


Gavin and I went to Jazz Fest on Friday, May 3rd. It was SO HOT but fun. His team at work took half the day off and went out there together. One of Gavin's co-workers was playing in "Twangarama" - a band that performed at the Fest. They were great! Good Times :)