A Horse is a Horse of Course of Course

I just can't be around horses without singing the theme to Mr. Ed.  Yesterday, John and I got to do something I have been wanting to do for so long.  I finally took him for an evaluation for hippo therapy.  I got a call on Monday that they wanted to see him for an evaluation and they had an opening for Wednesday.  Can't you just feel God moving and making that happen for us?  So I picked him up from school around 11:30 yesterday and we set out on an hour drive to Magnolia (northwest Houston).

I didn't think we would ever get there.  That place is in the sticks.  But I was very impressed with the facilities.  The only unimpressive part was the parking lot.  It was all gravel with dirt around the edges.  Have you ever tried pushing a wheel chair across gravel?  It's not easy.  Going across the dirt was a little easier, but still not ideal. 

We went in and met some of the staff.  The physical therapist, Lee, met with us and after answering some questions for her, she wanted to see what John could do.  So she spent a little time playing with him.  She got a good feel for his balance and his abilities, as well as how much he seeks imput from outside sources.  She then put him on this seat that moves and simulates a horse's movement.  He did well on it, but in no time he was wanting more imput.  Then she tried on a helmet to see which one would fit him and then we set off outside to the arena.

We rolled him up on the wheel chair ramp, and someone brought a horse over for him to get on.  The horse's name is Dancer.  She put the helmet back on his head and then he began to cry.  He knew something was about to happen and he was not sure of it.  So they got him up on the horse.  One lady led the horse, and two people stood on either side of him to hold him up.  Once they started to walk, he calmed down and then seemed to really enjoy himself.  He looked so cute up on that horse, with the helmet on his head.  They walked two laps around with him sitting up.  Then they layed him on his stomach across the saddle and walked one lap.  They tried to then let him lie on his back across the saddle, but he wanted to sit up.  So they sat him up sideways on the horse and walked one final lap.  He really did great.

He will begin therapy this summer, riding once a week for 7 weeks.  It will depend if they have any spots open up whether he will be able to ride again in the fall.  But I feel like that 7 weeks is better than nothing and he could really benefit from that time.  The therapy sessions are 45 minutes long and about 35 of those minutes are actually spent on the horse.  He will not only ride the horse, but they will also be doing therapy with him as he sits on the horse.  I am so excited to watch him.

Of course I took some pictures and even a video.  I am so excited about this.  Thank you, Lord, for providing this opportunity for our son.

Coming out of the shoot.

Still not too sure about this.

Getting the hang of it now.

I'm riding.

On his tummy.

Side saddle.

Ride em Cowboy

On his tummy

Have you Heard the Good News?

Have you heard the good news?  Have you heard the good news?  Jesus has risen, he is alive.  Have you heard the good news?  Have you heard the good news?  Jesus has come back to life again.  Every time I think about Easter, this song comes to mind.  It is a song I learned many years ago in children's choir at church, and I still remember most of it.  I remember a lot of those songs that I learned all those years ago.  I sing them all of the time.  Before we were married, Tommy was always amazed that I could remember them and he didn't mind me singing.  Now, I think he just gets annoyed by it.  But I still sing them, especially to John.  He loves them.  I don't have the best singing voice, but he doesn't care.  He still smiles and giggles when I sing.  I'm not sure that is a good thing though.

For the past several years (I can't remember how many exactly) we have made it an annual tradition to spend Easter weekend at my parent's house.  For those who observe lent each year (not us), you are not supposed to eat red meat on Friday, especially Good Friday.  So many people in Louisiana choose Good Friday to have a crawfish boil.  Because there is such a high demand for crawfish on that day, we choose to do our crawfish boil on Saturday.  We also boil shrimp just for a little diversity.  We spend most of the day outside.  Mom and Dad have a really nice patio area between the side of their house and the outdoor kitchen.  So we sit outside and visit, while the boys, usually my dad, Tommy and my brother Jimmie, get the crawfish and shrimp ready and begin to boil.  All of my family is there.  It's one of the few times each year that my mom has all of her chicks in the nest at the same time.  And with the addition of spouses and grandkids, it makes for a hectic but exciting weekend.

In the past, we have chosen to get up early on Saturday morning and drive over to Kinder, instead of going on Friday.  Mainly it's because that means we only have one night without a nurse for John.  I end up sleeping with him, and let's face it, who really sleeps well when they have their kid in the bed with them?  Add to the fact that he has a monitor that alarms everytime his oxygen drops below a certain level, and you get a night of very restless sleep.  This year, we decided to bring our nanny, Kirstin, with us.  She had never been to Louisiana and so we were excited to show her some of our crazy traditions.  Also, it was helpful to have an extra set of hands for John during the day.  So because of the extra help, we decided to go over on Friday afternoon.

We got there in time to start grilling streaks for dinner.  Jimmie and his crew didn't come over until Saturday, so it was just us, mom and dad, Carrie and Jennifer, and Jason for dinner.  We sat outside and enjoyed the nice weather, along with the mosquitoes.  Okay, so maybe it wasn't such a good idea to sit outside, but I still enjoyed it.  When we have steak and potato for dinner, John gets to have a baked sweet potato.  Add a little butter and cinnamon to it, and you have one of his all time favorite foods.  That boy ate every bite, and let me tell you, it was not a small potato.

Saturday morning, we had a good breakfast.  That was good because that was going to hold us over until the crawfish and shrimp were ready mid afternoon.  Jimmie and Chrystal and the kids got there around noon on Saturday and we all had a lot of fun, visiting and playing outside.  John was in heaven getting to be outside most of the day.  I did have mom put him down for a nap because I knew he would be exhausted if he didn't have one.  Mom is the nap fairy and can get that kid asleep faster than anyone.

After a fun day on Saturday, we all went to church on Sunday morning.  We heard a great Easter message and the choir that mom directs and dad sings in, sang several songs.  What a great way to celebrate Christ's resurrection.  Easter dinner was dad's famous roast with all the trimmings.  What a fun time we had.  We left shortly after lunch for Texas.  We were all pretty tired when we got home.  John was asleep by 7:00 that night and slept for 12 hours.  Tommy and I were both in bed with the lights off by 9:30.  John came home from school on Monday and took a 2 hour nap, and still fell asleep by 7:00.  That's how much fun he had.  By Tuesday, he was caught up on his sleep and ready to go the rest of the week.

I always enjoy our Easter weekend.  It's so nice to have a nice family gathering without the stress of buying gifts for everyone.  And it's always in the same place, so there are no decisions to be made over who is going to host.

Thank you, Jesus, for dying on the cross and rising again so that I can be forgiven for my sins.  Thank you for making that sacrifice for me.




Friday night dinner

Giving the crawfish a bath.

William and Kash

West Texas Girl holding her first crawfish.

Ready to eat

Big Dog hard at work

Hanging out with Kirstin and Jenn.

I only have eyes for you.

Reagan sporting her new LSU outfit.

Serious conversation

Fighing over the monkey.

John and Grandaddy

Deep in thought.

Checking out William's new Spiderman toy.

William in his cool shades.

How we eat them.

Kash chowing down.

Jimmie, Chrystal, Kash, William and Reagan

Tommy, John and Joanna

Jimmie, Jason and Joanna



Thoughts

I don't have a lot of new information to blog about, but I do have a few thoughts I wanted to share.  To tell you the first thought, I have to admit to you all that I am a weekly Grey's Anatomy watcher.  I've watched the show from the very beginning, and have continued to watch through the years.  It is one of my guilty pleasures that I don't admit to just anyone.  It has a lot of questionable content, but some of the story lines fascinate me.

While watching last week's episode, there was a scene with a new mother who was faced with a difficult choice.  Her son was born very premature and weighed just over a pound at birth.  He has been through numerous difficulties and procedures, all trying to stabilize him and sustain his life.  In this episode, a new complication arose and the doctors gave the mother a choice.  The first option was to choose to have a surgery for him, that would be incredibly difficult on the baby and he may not live through, and there was no guarantee that it would help his condition.  The second option was that she needed to consider what they called A N D (allow natural death).  They gave the opinion that even if the baby survived, he would be facing possible Cerebral Palsey as well as many other medical issues his entire life.  Would she want her son to be in pain every day, to know that he will probably never walk, or talk and would have to eat through a feeding tube his whole life?  Is that a quality of life she wanted for him, or should she just let him die and be at peace? 

This argument comes up frequently on television, but I gotta keep in mind that these are the same people who make characters who are supposedly Christians look crazy and they always promote a mother's right to choose abortion.   I do have to admit they they did show the opposite side of the argument from the mother's perspective, but it didn't seem to be as convincing as the first side.  But the point that stuck with me was that they seemed to be saying that her son would have no quality of life if he lived that way and it didn't seem to be worth it. To that I say, bull.  Now, granted my son doesn't live in pain every day of his life, but he spent the first 3 years eating through a feeding tube.  He has a tracheostomy tube to help him breath.  He cannot walk, he cannot talk, and he still has to wear diapers.  He is 100% dependent on us for survival.  But every morning I carry him from his bed to the living room and I get a huge hug when I do.  As I'm getting him dressed, when I sit him up to put his shirt on, he almost always leans forward and wraps his arms around my neck, and sometimes, I can't get him to let go.  When he gets off of the school bus and sees me, he has a huge smile on his face and when I take him out of his chair, I get another hug that says he missed me.  He may not be able to tell me that he loves me, but he shows me every time he wraps his arms around my neck.  Even with his circumstances, he rarely cries and is almost always happy.  He lives life to the fullest each and every day, as if to say, I'm just happy to be alive.  We should all live our life that way.  Sure, I wish life were easier on him, easier on us, but if I had it to do over again, I wouldn't change it.  I would rather have my son the way he is now, then not have him at all.  It is worth every single second I get to spend with him each day.

Something else that has hit home for me in the last couple of weeks came straight from God's word.  Our Sunday School class has been studying a book called "Read the Bible for Life" by George Guthrie.  When we started to study the book, it really hit me that I spend almost zero time reading God's word.  What I know about it, I heard through stories growing up in Sunday School.  Most of those stories I have never actually read for myself.  So I decided to make a committment to spend time in God's word every day.  I started a reading plan that, if followed exactly, will allow me to read through the whole bible in one year.  So far I have been pretty solid in following through, although I have missed a few days here and there.  But I have made it a priority each morning, after I get John on the school bus.  Before I do anything else, I come in, fix a cup of coffee and sit down to spend time in his word.

A couple of weeks ago, I began reading through Exodus.  This is where Moses is born and goes to live with Pharoah's daughter as her son.  His mother gave him up to her to spare his life.  Then later in his life, God uses Moses to lead the Isrealites out of Egypt and out from under Pharoah's rule.  He has promised them a great land to live in and Moses is to lead them there.  But God chose not to lead them on the most direct route to this land.  Instead he led them through the desert, where they would face many obstacles along the way.  This is where it hit home for me.  He led them through what we would call (the scenic route) for several reasons.  First, it was because if they had gone the more direct way, they would have had to cross the land of the Philistines, whom they would have had to fight, and they were not ready to do battle with such a powerful army.  Second, God wanted his people to be prepared to live in the promise land. They had been in captivity for hundreds of years and their habits of dependency and lack of faith had deep roots.  He used the trials and hardships of their journey through the desert to teach them faith.  Third, God simply wanted them to take him at his word.  He told them that he would protect them and provide for them, but they didn't believe him.  He wanted to show them all of the ways he can do so.  And last, but probably the most profound for me, is that God's map may not be the shortest route so that lessons may be learned along the way.

That is something I am beginning to finally learn with John.  When he first got his trach, we were told that he would probably have it for 6 months to a year.  But obviously, God had a lot to teach us, because nearly 7 years later, he still has it.  We have learned a lot during that time, but mostly I have learned that God's timing is all that matters.  I have learned to have faith that he is in completely control.  John will be okay, and we will be okay.  We just have to learn to trust him and not try to solve everything ourselves.

There is one quick update on John.  Last week I took him to see his Opthalmologist for the first time in a year and a half.  I was supposed to take him back a year from the last visit, but time got away from us.  We knew that he was somewhat near sighted before and that he was borderline of needing glasses.  But we were convinced that he would not leave them on his face, so she didn't push the issue.  Well when we went last week, his prescription has doubled since the last time he saw her.  Not only is he very near sighted, but his eyes are worse than mine were before I had the Lasix surgery.  I know how incredibly blurry my vision was without contacts, so I can't believe he has been getting along all this time without any glasses.  So I talked with a close friend of mine, who happens to be my eye doctor, and I talked with the folks at her office who fit people for glasses.  We came across some frames that are made for recreation.  They are called Rec Specs and instead of having the arm go behind the ear, they go along the side of his head and then have a strap across the back to hold them in place.  Essentially, they look a lot like goggles.  I think these may work best for him.  So we are waiting to get those frames in so we can try them on John and see how they work for him.  He has never been excited about having anything near his eyes, and normally doesn't let us even put sun glasses on him.  But my hope is that once we get them on and he realizes how much better he can see, that he won't want to take them off.  I can't wait to post pictures of how he looks in them.

There is one finally thing I want to leave you with today.  A friend of mine sent me a link to a blog of a family she knows.  They had a baby boy in March, and even before he was born, they knew there would be complications.  He has some neurological problems and they are faced with making some very tough decisions.  They are strong and faithful people, and they are praying for God to help them make the right decision.  If you would like to know more about this family, you can go to their blog here  Please join me in praying for these parents and for this precious little boy who has gone through so much in such a short period of time.

That was fun while it lasted

Today is Monday and that means another therapy day.  Last week, neither therapy was very good.  He wasn't much interested in the eating, and he was just not having any part of physical therapy.  So today we set off once again to see how it would go.  He did a little better with OT and eating, but still not as good as he has been doing.  But the PT is where it all goes down hill.

Since I posted a few months ago about how well he did during a PT session, I was hoping to be able to build on that and have a lot more good things to tell you.  But there hasn't been much.  It seems that each session since has steadily declined and we are at the point now where he won't do anything that we want him to do.  Today, I had enough of watching him.  I know the things he is capable of and he is just not doing any of them in therapy.  I can tell by the demeanor of his therapist the last few weeks that she no longer knows what to do with him either.  She has continued to try, but nothing seems to work for him.  I don't know if it's the therapist and he's just not relating to her, or if he is just really that stubborn and just doesn't find any of it interesting.  So today I made the tough decision to discontinue his PT for the time being.  This doesn't mean that we won't start back again in the future, but for now, it's not worth the time or effort being put into it, because he is taking nothing away from it.  He does better on his own at home.  Both his therapist and I agree that something needs to be done about his sensory problems in order to make progress in his gross motor skills.  I would say that it was fun while it lasted, but it really wasn't. 

Today I came home in search of a solution for this.  My immediate thought is horse back riding, or hippotherapy.  Since I struck out with the place closest to us last week, I decided to call the place that we tried 2 years ago and see if I can make any headway.  I spoke to a lady at one of their locations and she informed me that they don't do hippotherapy because they do not have any licensed therapists on staff.  They only do therapeutic riding, which is different.  I'll explain in a few minutes what the difference is.  But she told me she would contact the lady at the other location and we could have an evaluation and see if therapeutic riding would benefit John in any way.  I asked the lady if she knew of any other places in the area that offers the hippotherapy and she gave me the name Joy Riding Program.  This place is located in Magnolia, which is probably about an hour's drive from here.  They have licensed Physical and Occupational Therapists on staff.  So I called them for information.

I spoke with a very nice lady named Lee, who was extremely helpful.  I felt like I was finally making progress.  Lee went over what they do and it all sounds great.  I was a little misinformed about what hippotherapy really is so it was nice to get a clarification on it.  Of course they don't have any spots at the moment, but she felt confident that he could get in for their 7 week summer session and then it would be a possibility that something would open up for the fall so he could continue riding.  So my next step is to fill out the registration packet and send it back so that they can set us up for an evaluation.  After talking with Lee, I am much less discouraged than I was when I left TCH this morning.  And I should add that on my way home from therapy, I prayed and asked God to help us figure out the right path for John and to provide him the opportunity.  Of course, God being God, he seems to be answering that prayer right away.  Although we aren't officially enrolled in the program, I know God is working and that big things are on the horizon for John.  I'm learning more and more each day about just how mighty our God is!

I want to share with you a video that the Joy Riding Program has on their website.  The video is about 12:30 long and it explains the difference between therapeutic riding and hippotherapy and it also explains all of the things that hippotherapy does.  Talking with Lee did make me feel better, but watching this video made me hopeful of all of the things John could accomplish if we can just get him on a horse. 

Please pray for us and for John as we continue to search for ways to help improve his gross motor skills. Pray that God will open the doors to the right program that is going to help John make bigger strides toward his potential.  Also pray that we will continue to trust in God's perfect timing and to know he is leading the way.  I read this morning about God leading the Isrealites out of Egypt and away from Pharoah and I was thinking I could really use a pillar of cloud to lead me in the direction he wants me to go.  But I have faith that if I seek his guidance and listen, he will show me the way.

City Life isn't Always a Good Thing

Most of you know that I grew up in a very small town in Louisiana. With the exception of the 4 years I went to college in just a slightly larger town, that is the only place I ever knew. Then I got married and moved to the 4th largest city in the country. It was a shock in the beginning, having to learn where the northwest freeway and the south loop and the west belt were. I still haven't figured all of those things out completely and I really don't know why we don't just call them by their actual names. But that is the way they do things here and if I want to know where accidents are when they talk about them on the radio, I better learn them. I soon learned that just because you are part of a large city, doesn't mean you have to actually go into the city. Every area of town is kind of like it's own small town. We live in Katy, which is the west side of Houston,and I rarely have to go into Houston city limits because most of what I need is in Katy. Now, Katy is quite larger than where I grew up, but it still has a small town feel and it helps to not feel so overwhelmed. I have really enjoyed living here. We also have one of the largest and best medical centers in the country and between myself and John, we are very fortunate to have that at our disposal.

But sometimes I wonder what the point of having all of this is if you can't actually have access to what you need. Specifically, I am having a hard time getting specific therapy services for John that our friends in Austin (by far a smaller city) has been getting for quite some time.

A few years ago, I heard about something called hippo therapy(it has nothing to do with hippopotamuses) from our Austin friends. I had never heard of it before. It is a type of therapy that uses horses. Study shows that the gait of a horse is most similar to the gait of humans, so kids who are immobile could benefit from riding horses and getting the feel of the movement when they walk. Other benefits are increased trunk control, a stronger core, and sensory integration. I found out about a company that does this and they have 3 locations in the Houston area. However the closest to us is in Missouri City and that can be close to an hour drive each way. So we thought this would be a great summer activity for John and we would be willing to drive that far once a week if it could in deed help him. So I took him out there for an evaluation and to tour the grounds. It's a great set up and a nice area. The lady who did the evaluation said she thought John could definitely benefit from this therapy. However, she thinks he needs to start with either a physical or occupational therapist and at the time they didnt have one on staff. But they were trying to hire one and when they did, they would give us a call. It's been two years and I still haven't heard from them.

So then I began to hear people talk about a different place in Houston that does the same therapy. This place would be a closer drive for us. I've called the place twice in the past and got no return call. This morning I finally got through to someone and the answer I got was that they currently have a long waiting list and couldn't tell me how long it might take for a spot to open up for him. But once again, they would give me a call when they had something. How much do you want to bet that I never hear from these people again. Why is it that my friend in Austin had no trouble getting in and has been doing this for a couple of years, but we can't even get a call back from anyone here?

The other therapy I want John to do is called therasuit therapy. This is very difficult to describe, so if you want to know more about it go to www.suittherapy.com. This is a very intense therapy. It lasts for 3 weeks and we would go five days a week for 2 hours each day. It is designed to help with balance, coordination, sensory, motor skills and strengthening the muscles. Again, I found out about this from our friend in Austin. A few summers ago, they came to Houston to this particular location and did the 3 week therapy. Now, there is a place they go in Austin and they are able to do it regularly there. However, this seems to be the only place in Houston who offers this type of therapy. Last summer we went for an evaluation and again they thought John was a good candidate for the therapy. However, they didn't have Any openings until October. Because of the location and the amount of time we would spend traveling to the place, it wasn't an option for us to do it during the school year. So we set up time for this summer to go back and get started. While that time is just a few months away, it frustrates me to think that we have wasted all of this time when he could have been doing it already. I am looking forward to him doing this, but the drive each day is going to be brutal. Just one more disadvantage of living in the city.

Here is a problem we are facing. John is in private physical therapy on a weekly basis. But the sensory issues that I talked about are beginning to get in the way of him making any real progress. The therapist and I both feel that if not for the sensory, he would be more than capable of walking and standing. Both of the therapies I've talked about can address the sensory so that he can start making progress, but we can't seem to get into those. So I feel like I'm beating my head against the wall each week when I bring him to PT. He is so big and strong enough to get out of any position the therapist puts him in. If he doesn't want to do something, you can't make him. And it quite often feels like he doesn't want to do the things we want him to do. So do we keep beating our heads against the wall and hope we will see a breakthrough, or do we keep waiting for a spot to open up elsewhere in this giant city?

On a different note, we are still making progress with sleep. It has been almost 2 months and still no ventilator and no oxygen. We have finally let ourselves talk about removing the trach. I even talked to his ENT (who would actually be the one to take it out) and she told me what the game plan would be. So if all continues to go well, and the sleep study in May is good, we could be trach free some time this summer. Now that is something to celebrate.

Where has this kid been all this time?

Well, it's Monday, and around here Mondays are for therapy.  John goes to Occupational therapy at 9am and Physical therapy at 10am every Monday morning.  Then he goes to school for the second half of the day.  Which means, he's pretty pooped by the time he gets home at 4:00. So this morning, on this rainy, dreary day, we loaded in the car and hauled ourselves to therapy.

He hasn't been in 2 weeks.  His physical therapist was out last week, so we decided to take the week off from occupational therapy as well.  So I wasn't sure what to expect after missing a week.  Normally, he does really well for OT and then is extremely stubborn with PT.  His OT has been working on him moving food around in his mouth with his tongue, chewing food before swallowing, and drinking from a cup.  He has been doing well with these things even though it is still hard for him.  You never realize how much work you actually have to do with your mouth in order to eat food until you watch someone who can't do it.  His OT is always happy with the work he does and she has seen improvement since we started this past summer.  But today, she said he was in his own world.  It was kind of his way or the highway and he didn't work as hard as he normally does for her.  So I guess I can give him one bad week, since he normally does really well.

When we got to PT at 10:00, I was a little skeptical.  If he was stubborn for OT, what on earth was he going to be like for PT.  He's always stubborn for her, so I can't imagine him being worse.  All of the things she is trying to get him to do for her, he does at home with no problem.  But for some reason, when he is in that room with her, he won't do any of it.  So this past week, I took some videos of him at home.  One was him crawling on all fours with his head up, like she has been trying to get him to do for months now and one was of him walking along the wall in the hallway.  She was so excited to see those videos to know that he really can do those things.  After we saw him last time, I got the impression that she was very frustrated and discouraged with what they have been able to do so far.  But all of that changed today.

The first thing she did was put him in a set of parrallel bars that they have to see how he would stand in them.  Not only did he stand in them, but he grabbed on and started walking.  That was the first big surprise.  Then she wanted to do just some static standing with him to work on his balance and stability.  The PT tech that was with us had a toy that really caught John's attention and he stood there and played with that toy for at least 10 minutes.  The PT sat behind him and held his belt loop and had one hand on his shoulder and John did the rest of the work, without holding onto anything.  He was having so much fun with that toy, and his therapist just couldn't believe how well he was doing.  Then she wanted to see him walk with a walker.  The one we used today was different than what we have at home.  At home we use a gait trainer.  It's heavier and has lots of straps and supports for him.  But the walker is more like what you see older people use.  The bar goes in the back and he just hangs onto the sides and walks, guiding it where he wants to go.  There are no straps or supports for him and it isn't as heavy.  With this, he walked around a section of hallway that was about 250 feet.  He was a little slow, and she had to use her foot to keep him from crossing his feet as he walked, but he made it all the way around.  When we came back into the therapy room, she gave him a short break and then worked with him going from the sitting position to the standing position.  He did pretty well with this as well.  Although going from standing back to sitting is a little more difficult for him.

Overall, it was an excellent therapy session and I think it even rejuvenated his therapist some.  She seemed to be less discouraged now that she has seen all of the things he is capable of.  She has a better sense of what he can do and where to go from here, so I think that will really help us going forward.  I joked with him saying that the clothes he was wearing was his therapy outfit and that I was going to make him wear it every week to therapy.  I really was only half kidding.  Hey, if something is working, why change it, right?  The only other factor we could think of was that he was wearing his hearing aids today.  Apparently, I haven't been putting them on him before therapy in the mornings, but for some reason I did today.  Maybe he was more alert with them on and that is why he was doing well.  Or maybe it's just taken all of this time for him to get comfortable with the therapist and to decide he wanted to do the work.  Whatever it was, I hope he keeps it up.  It's definitely something I have been praying about, for us to figure out what exactly was going to motivate him to work.  It's very exciting to see him do so well.



I'll end this post today with two pictures and a video I took of him at therapy.  He is such a big boy!

reaching for a toy

Progress...Maybe?

It has been 9 nights since we took John off of the ventilator, and honestly, I'm not sure how it's going.  The first 3 nights were great.  He slept with no ventilator and no oxygen and did quite well.  But when Friday night came around, all of a sudden, he needed oxygen right away.  So he slept with oxygen that night until about 3am, when the nurse was finally able to turn it off.  Saturday night was much the same, except the oxygen was turned off at 4am.  So at this point I'm thinking, 3 steps forward and 2 steps back.

Sunday night came and we were able to get him to sleep without the oxygen.  So I thought we were making progress.  But in the morning, the nurse told me he turned the oxygen on from 1am to 4am.  DRATS!  I still can't figure out for the life of me why he didn't need the oxygen the first 3 nights but now he does.  I'm just thinking maybe he's more tired and not taking deep enough breaths.

Monday and Tuesday were much the same.  He needed oxygen part of the night, but not all of the night.  By now it's really starting to bug me.  I guess all of these years with John has not given me much patience.  I want to see progress but I'm not doing so well to wait for it.

So last night, we put him to bed and it was the same thing.  His oxygen levels were below 92 and wouldn't come up without oxygen.  And even with the oxygen, they were only around 93 or 94.  None of it made any sense to me.  He should have higher oxygen sats with oxygen.  So I sat down in the chair in his room and began to tear up.  I'm just about at my breaking point and about ready to put him back on the ventilator.  I want my baby to sleep well and I want to make sure he's able to breathe well.  So my genius of a husband suggests that we take the probe off of his toe and put it on his thumb just to get a different reading.  We have been struggling with the pulse ox probe on his toe.  It's very tricky to get it in just the right spot to get a good reading.  But his thumb is smaller so it shouldn't be hard to get it on there right.  So we get it on his thumb, and low and behold his oxygen saturation is 98%.  AMAZING!  Of course that was with oxygen, but at least we knew then that it was the probe not reading right on his toe instead of him not getting enough oxygen.  The problem, of course, is we can't leave it on his thumb because he likes to put his hands behind his head.  That would cause a problem with the signal picking up.  So again, my brilliant husband suggested that we put it on his second toe instead of his big toe.  It's smaller and we shouldn't have a problem getting it on.  So that is what we ended up doing.  And VOILA!  No oxygen was needed all night long.  He still has his moments of apnea and his oxygen levels do drop down when he has those, but according to our nurse, they never went below 90% and they always came right back up.

So maybe the progress wasn't necessarily John's this time.  He has probably been doing just fine all along and we didn't know.  Maybe the progress was mine.  I am the one who needs to learn a little patience.  I just need that voice inside my head (or the voice of my husband) keeping me calm and reminding me to see the big picture and give it some time.