Then (2007) and Now (2009)

The past two years have seen a lot of changes. Look at these pictures and see how much Jack has grown and developed!

Two years ago, we spent too much time in Dallas in January. We were very worried about how low Jack's oxygen levels dropped while he slept at night. I worried about how he would be able to breathe while sleeping. I worried about what we needed to do and then we went through countless sleepless nights to get Jack started on CPAP and then Bipap. Now we have the Bipap AVAP and he does great! We worried about whether the subdural shunt would really protect Jack from having too much pressure on his head all by itself. It didn't and Jack had an endoscopic third ventriculostomy, then a VP shunt which became infected and had to be removed. Since we had it replaced, we had one scare that turned out to be an ear infection and cellulitis. Now the VP shunt is doing it's job and there are no concerns about pressure! Wooohooo!

This year, we learned that Jack has even poorer vision in his right eye than we'd thought. He is actually legally blind. We worry about the best way to teach him to read, how this will affect his life....can't wait to be on the other side of the worries over this one! Keep us in your prayers.

I want this blog to be real. It is about the real life of a great little guy who continues to amaze me as he adapts to the world around him. Well, I wouldn't be real if I wasn't honest enough to tell you that today the vision thing and all the other things hit me hard today and I cried. I cried because it's not fair. I cried because I want to make everything right and perfect. I cried because I feel like if I'd only done better for my little guy, he would not have to go through so much. I cried because there are idiots in the school system. [All the while acknowledging that there are good people there too.] I cried because I did not think that anyone else could understand.

I think back to the past two years and I cried out many times right here on this blog about that CPAP. Here we are now and Jack's latest sleep study was fabulous on the Bipap AVAP. Dr. Fearon says that the two things he most worries about impairing the development and cognitive abilities of kids with Apert syndrome are taken care of for Jack--excess pressure on the brain and not enough oxygen to the brain while sleeping. All that crying and God had his hands on my family the whole time!

I'd love to declare that I am done crying and from here forward I put all my trust in the Lord, hallelujah! But you and he knows that I'm not that good.

Old Friends, New Friends, and Back Home

Shortly after we arrived in Dallas, we heard that the Wares were on their way to see us! It was great to see Kayla and Amy again and to meet Dustin, Caleb, and Katie. (I hope I spelled all your names, right.) Kayla is doing fabulously. She walks all over the place, we heard her talking a little and it was super cool to see the way she hangs out with her older brother and sister. Kayla, like Jack, loves the outdoors and Caleb was VERY B-O-R-E-D hanging out in the room talking so we headed to the playcourt.
Here's Kayla all pretty in pink. Big Sister Katie

Big Brother Caleb...it was hard to get a good shot of Caleb. He was playing basketball and tennis (and dodge ball with his dad) and working out his boredom....

I have no excuse for not having a picture of the whole family. Y'all are a good looking bunch! Send me a family pic and I'll post it here!
Tuesday before our final appointment of the trip with Dr. Fearon, we headed up to Medical City a little early to see our old friend Baby Wade. Wade and Jack are not little guys anymore! We hope Wade gets good news from his MRI too.

We still had a little time before our appointment so Jack enjoyed watching the train......

And playing in the play areas at Medical City.

Dr. Fearon had already told us that we did not have to come back for 18 months so Jack was ready to go and take a nap. He was tired!

Look at that look on his face! It's like he's saying, "I know she'll come after me. The good ones always do!" Bye, Cindy, we'll see you next year!

Shortly after we got back to the hotel, we met up with Aiden and his family. Notice I was holding Jack back. He wanted to give Baby Aiden a big ol' hug but Baby Aiden wasn't so sure about that.
We hope to hear soon that Aiden's sleep study and operation all turned out great!
It was great to see everybody but we were all overjoyed about the prospect of spending 18 months out of Dallas. Jack has never done that his whole life!
Finally! Back home and enjoying that laughing baby http://www.youtube.com/watch?v=5P6UU6m3cqk on the internet.

So I finally let him drive

at McDonald's....gotta burn off all the sugar from that pie!

We need groceries!

Mama's not feelin' real creative for lunch and we have not been to the grocery store yet. Jack says, "That's alright. I'll eat another hamburger if I have to." :)

What/How Does Jack see?

Since we got the news that Jack has 20/300 vision or worse, I have been trying to imagine just what and how Jack sees things. I wear glasses so I tried taking off my glasses and just squinting. My vision really is not all that bad but I can't find anything when I'm not wearing my glasses and I do not enjoy talking to people because their faces are only a blur when I don't have my glasses. But still....it's not what Jack sees. So I decided to try a little expirement. Here's a copy of an email I sent out recently about Jack's hearing.
Now this is that same email at 1/16th the size of the original. That must be close to how Jack sees.
I think you can click on each of the samples and pull it up in its own browser window to give you a better idea. I don't want to resize the images because I don't want to distort the difference.

Old Friends, New Friends

We have had a great time seeing our old friends and meeting our new friends in person. I'll post pictures when we get back home!
Sent from my Palm Treo

It's All Good

The news from this trip has been great. We saw Dr. Fearon this afternoon. Dr. Fearon was very happy with Jack's MRI scan. He actually says that we can wait 18 months before we come back. He still wants to talk about doing the midface when Jack is about 5 years old. Surprisingly, he told us today that if we do the midface at 5 years old, he may have to have another midface advancement when he is a teenager. I'm a bit leery of waiting 18 months to do another MRI since Jack has had so many pressure issues. Dr. Fearon was very nice as he reminded me that Jack's two biggest problems are taken care of right now. His Bipap AVAP is working wonderfully to treat Jack's sleep apnea and the VP shunt is treating Jack's hydrocephalus. It will be wonderful to stay away from Dallas for a while. Everyone pray that it does turn out that way!!!

No race cars

Yesterday I had a small moment of sadness. We were waiting on the neurosurgeon and Jack was driving around in one of those Lil' Tikes cars. There was no one else in the waiting room so he had plenty of room and he was having a ball. He said "driving" [it was in Jackspeak but you'd have to hear it. I don't know how to write it]. I said, "You love driving fast! Are you gonna be a race car driver?" David looked at me and said, "I don't think so, Honey." Jack can do anything he sets his mind to but no matter how hard he (or we) tries you can't adapt a lack of vision to a task like driving that requires vision. It made me cry. What if my little boy wants to drive race cars?!!?
Jack's vision is what is. We will do what we can to maximize the vision he has. Fortunately, Dr. Price said that there was no reason to believe that his vision would get worse with time. And you know those race cars move so fast they're a blur to "normally sighted" people.....and they get awfully close to each other while driving....
:) For now, Jack is happy driving the vehicles that he is allowed to drive at the tender age of 3 and almost 3/4 years old. We'll stick with happy and deal with what comes as it comes.
Sent from my Palm Treo

Long But Good Day

We're done! This morning, Jack had his left ear tube replaced, his right ear examined, an endoscopy, and a MRI then we had follow ups with Dr. Kohlar, Dr. Price, and Dr. Mandujano. Dr. Hung said that Jack's right ear tube looked good. It was open and the right ear looked good. The left ear tube was out in the ear canal. Dr. Hung put in one of the long-term T-tubes. Dr. An said that Jack's EGD looked great-no more bleeding or erosions. Woohoo! Dr. Kohlar took a bunch of measurements and said that he would put them together, compare them to previous measurements and send a report to Dr. Fearon to help determine the next step. Dr. Price said that Jack's MRI looked awesome. His subdural effusions are completely gone! Another woohoo! His ventricles look great. Dr. Mandujano was very excited to see how much Jack has grown and developed. He loved that Jack is tolerating his Bipap so well. It's been a long day but all is well and Jack did great! Thanks for thinking of us!
Sent from my Palm Treo

Arriving in Dallas

It's a good thing Jack caught a nap on our connecting flight from Houston......

Legally Blind

It's been a busy week and I have not had a chance to update regarding our recent visit with the low vision rehabiliation specialist. Dr. DeCarlo was able to test Jack's vision using a couple of different tests. She says that the tests tend to overestimate vision but it's the best indication we have until Jack is able to do some of the other tests. Jack tested as having 20/300 vision or perhaps a little worse. That meets the definition of legally blind. Dr. DeCarlo explained that colors appear muted to people who have vision like Jack so Jack cannot distinguish things like gray letters on a white page. He needs bright colors with sharp contrasts but also not too much visual clutter since it can be overwhelming. He will eventually need magnification to help with reading but because Jack is so young, Dr. Decarlo recommended having Jack just look close up at things in isolation for now. As
he gets older and has more complicated lessons at school that will be a bit harder. We look forward to receiving her report. She provided a lot of information and it was hard to take it all in. So how does Jack feel about being legally blind? Uh....I think he was just waiting for us to catch up. He deals with what he's got. No wonder he doesn't like to color! :)

Riding on an airplane

We're off. Jack is happily eating a very early lunch and watching "Elmo Loves You!" One of his favorite parts is Trisha Yearwood's scene. I think he loves her voice. He loves music and she does have a beautiful voice. For those who don't know, we're on our to Dallas for Jack's first annual follow ups. Monday morning, he'll undergo sedation for an endoscopy to check on his reflux, an ear tube replacement, and a MRI to check on his big ol' brain! Be in prayer that all goes well and he recovers well. The rest of Monday will be filled up with appointments with the anthropologist, neurosurgeon, and pulmonologist. Tuesday we'll see Jack's craniofacial surgeon as well as his ENT and gastroenterologist. We are hoping to see some old friends and meet some new friends so be on the lookout for pictures!

Recognized as the Star He is!

Jack is February's Shining Star at his school!

I blanked out the name of his school in the interest of internet safety. Otherwise, it says, "You have been a good role model in one or more of the following categories: caring, citzenship, confidence, cooperation, courage, fairness, honesty, perserverance, respect, responsibility, tolerance, work ethic" and it is signed on 1/30/09 by one of the school counselors.

Cool, huh?

Help Jack's Hospital Win a Wii!

A friend sent me this: "I was flipping through the coupons on Sunday and noticed that Colgate-Palmolive company are going to donate Wii's to 3 Children's Hospital. 1 of them is Dallas where you guys go. Check it out.... http://www.colgate.com/app/Colgate/US/Corp/CommunityPrograms/show-the-love.cvsp . "

Medical City Dallas was number 3 after I voted. Please go vote. I know it might seem a little silly but if you've ever watched a kid that's all too familiar with the sights and sounds of hospitals get ready for surgery you would do anything you could to distract them for just a moment or two....Thanks for your time!

Down on the Farm

Our sweet neighbor and her girls invited us to go out to the farm where their horse lives.
Here's Jack doing a happy farm dance!

Jack looks like such a tiny guy in this picture. This horse was really friendly.

Sophie really seems to love Odin. She loved it when Lori picked her up and let her pet him.

Big sis, Lexi, got to ride Odin!

Jack kept Sophie occupied while Lexi was riding.
Lori offered to give Jack a ride on Odin but he said, "uh, Wawa [Jackspeak for Mama]" so he got a piggyback ride instead.

While were busy "horsin' around", Lexi made a big volcano!

After all that fresh air, we were hungry. Where else do you take three hungry, tired monkeys? McDonald's, of course!

Speech is a Skill!

BE FOREWARNED! THIS IS AN ANGRY POST.

Rachel Coleman of Signing Time has a soapbox she gets on from time to time. She says, "Speech is a skill. English is a language. Spanish is a language. ASL is a language. Speech is a skill." If you don't closely know anyone with a speech delay or who does not speak for whatever reason, you may not see a reason for the distinction. The point is this. There are several different languages in this world. None is superior to the others. They are all language. American Sign Language is not a form of English. American Sign Language is its own seperate language.

Speech requires the coordination of several small muscles. Children across the board are able to coordinate the muscles required for sign language much earlier than they can coordinate the use of the muscles required for speech.

Jack is speech delayed. Because there are many people who know Jack that don't know sign language, they do not see his communication. Wow, I really like how I worded that just now. Is Jack's sign language textbook perfect? No, but hey, at least he knows sign language and you know what? He understands everything you say just as any other very smart 3 1/2 year old boy understands it. If you don't know sign language and you don't understand a word he signs, which one of you has the deficit?

He speaks more and more everyday so he is getting that coordination of muscles worked out. Hear me again. He is getting the coordination of his muscles worked out. If you were on a playground and you saw a kid that was "batting delayed" as in all the other kids on the playground could bat a ball pitched at them and this one kid could not, would you treat that child as if he were mentally deficient? I think not!

So what happened? Why the angry post? Jack receives physical therapy, occupational therapy, and speech therapy through our local school as part of his regular school day. At the beginning of the year, Jack was assigned to the physical therapist. He has done so well with physical therapy that she turned him over to the licensed physical therapy assistant. Since the LPTA took over, we received note after note that stated, "Jack did not cooperate with therapy today." While at home, we see Jack continuing to improve his balance and strength and coordination. After several weeks of this, I asked her for a meeting. Instead, she asked for a phone call and I am ever so glad that she was not within arm's reach of me. My first question to her was one that I was slightly concerned that she might find offensive because it is so basic to working with any child. "Do you tell him ahead of time what you want him to do?" Her answer completely floored me. "Well, yeah, well, kind of, I don't always 'cause I'm not real sure how much he understands." I stopped her before she could go on and stated "He understands everything that you say. You should assume that he understands everything you say. You should prepare him by telling him what you are going to do." The conversation went on with me giving her more BASIC tips on working with any child. Toward the end of the phone call, she said "I think maybe I just need to be more firm with him." AAAAUUUUUGGGGGGGHHHHHH! More firm?!!? [I just deleted the stuff I typed in here because it wasn't nice and really does not need to be said.]
I've talked with Jack's teacher who talked with the physical therapist. The physical therapist is supposed to be calling us to discuss how we want to handle things.

I now realize that this LPTA never actually gave me a reason for assuming that he does not understand things. I assume it is because he does not yet speak more but really for all I know it's because of the way he looks. Either way, the assumption is not terribly flattering for her and she should know better but it makes me so sad. I was so worried about Jack starting school. I have heard so many stories of children being underestimated and failing to thrive because nobody tried because it was assumed that the child just could not keep up. We were blessed with a wonderful preschool teacher and I let my guard down on that one issue.

Take the time to get to know Jack and you will be amazed at what he knows, what he thinks. I don't think we have even begun to scratch the surface of what he is capable of. In his short 3 years and 8 months, he has had 12 total surgeries--8 of those were brain surgeries--and he has had numerous tests that required anesthesia. He has severe obstructive sleep apnea that caused him a great loss of sleep in his first couple of years of life. Yet, he is developing at an amazing rate. DO NOT UNDERESTIMATE MY SON. He is delayed at present but you are missing out if you are not paying attention to what he has to say. You may not understand him yet and that's okay, not everybody can learn a second language. One day, he will speak English more clearly and you will.