Blessings

In light of the week I've had, I thought I'd share the following song with you. This has kind of become our family's theme song. It has such a good message, especially in times of trials and sorrow. The song is by Laura Story and it's called Blessings. Our favorite line is "What if a thousand sleepless nights are what it takes to know you're near." We have had those thousand sleepless nights (I've had two this week) and sometimes that is when I feel closest to God. I hope you enjoy the song.

Sleep Study Results

I'm sorry it's taken me so long to get you this update. I've had several people ask if we have gotten the results from the sleep study and I can finally say, "yes we have." We actually heard from the pulmonologist's nurse on Friday morning, but the results we had left us with more questions. So I was waiting to see the ENT today to get further clarification before updating you. On Friday we were told that he slept really well the first half of the night, when his trach was open. But during the second half of the night, when his trach was closed, he didn't sleep as well and he had some obstructive apnea. So it was determined that he is completely fine to sleep without the vent and without oxygen as long as his trach is opened. My question was how much obstruction did he have and how much was caused by the trach being in his airway. Also, if the trach were removed, would that take care of the obstruction. The nurse was supposed to talk to the doctor on Friday and call me back that afternoon, but I never heard back from her. So today, we saw the ENT. We like this doctor better anyway. She is just as anxious to get rid of the trach as we are, so I knew that we could at least come up with a plan. So she looked at the results and gave me the specifics from the sleep study. With his trach opened, he had approximately 5 central apnea events per hour (which is about what he had before) and he had 3 obstructive events per hour. With the trach closed however, he had 3 central apnea events per hour (less because he didn't sleep as much with his trach closed) and 13 obstructive events. His lowest oxygen saturation while opened and closed was 88%. That's actually not too bad. But it is of some concern that he had so much obstruction with the trach closed. So we came up with a plan. We are going to start capping John's trach for all waking hours. Then on July 20, the ENT will do a broncoscopy on John to check his airway for any kind of obstruction. Once that is done, Tommy and I will meet with her to discuss how we want to proceed from there. We will discuss the risks of decanulating John and whether or not it is worth doing. So, we didn't exactly hear what we were hoping to hear, that he is absolutely ready to have the trach removed, but it's not completely ruled out either. It just may not be this summer like we hoped.

Appeal....denied

Tonight, Tommy and I went before the Katy ISD school board to plead our case as to why we feel John should be allowed to remain a student at Kilpatrick Elementary. This really has been a long process. In case I haven't told you already, let me go back to the beginning. In mid April, John and I were on our way home from his hippo therapy evaluation when my cell phone rang. I was elated that the evaluation had gone well and that he was going to be able to ride this summer. I was feeling like things were finally falling into place for John and that he was finally getting just what he needs to become the person he is capable of being. I recognized the number on the caller ID as being a Katy ISD number, but I knew it wasn't from his school. The lady on the other end told me her name and that she worked with the Katy ISD special education department. She told me that because of the recent growth in Katy, and because of the 3 new elementary schools being opened, the district had decided to move John along with a small group of other life skills students at Kilpatrick, to the life skills program at Elementary #33, Schafer Elementary. I have known for a while this was a possibility because our neighborhood was being rezoned. But when I got that call, my heart sank. I asked the lady if there was anything I could do to change that decision and she informed me that I could file for an intradistrict transfer from Schafer to Kilpatrick. So that is what I did. The process of this is to fill out on online application. Once that was submitted, I then had to pay a $35 fee for the application to even be considered. Then I was told I would hear within 10 business days whether my application was accepted or denied. Talking with many people, I discovered that the office that handles these requests automatically denies all requests that are not from a district employee wanting to move a child to a school closer to where they work. So as expected, I received an email denying my request. I immediately requested to appeal the decision, and was given a date to meet with a district committee to explain to them why I think John should be allowed to remain at Kilpatrick. On May 10, I met with this 4 person committee. I had taken time to write down some talking points so that I could made sure all of my concerns were expressed. I even had a letter signed by John's pediatrician stating that John needed to be in an environment that had a registered nurse on staff to ensure that his medical needs were being met. I wasn't sure at the time, but later I found out that the new school was hiring a Licensed Vocation Nurse for their campus. While, I have nothing against LVN's and there are many out there that are wonderful nurses, I felt that the nurse who is at Kilpatrick is trained in trach care and has years of clinical experience in dealing with kids like John. She had to reinsert his trach tube 3 times this school year after it came dislodged at school. So I knew that he was in more than capable hands with her. I was not and still am not sure what kind of training the nurse at Schafer will have in dealing with kids like John. I felt like the meeting had gone well and was hopeful for a good outcome. A few days later I received an email with the committee's decision. My appeal had been denied. The reason cited was that they felt his needs would be met at Schafer Elementary. To me, that is not a good reason, and considering the fact they have never met my son, how do they really know what his needs are. I knew that we had one more option, appeal to the the school board. Tommy and I discussed whether this was the course we really wanted to take. After a little time deliberating, we decided that it was worth the effort if it would give us the opportunity to have John remain at Kilpatrick. I submitted the appeal to the Superintendent's office and received an email giving us a date and time to go before the board. Last night, we stayed up until midnight, listing out the things we wanted to say and Tommy typed them up in a dialogue format so that he could read them to the board. And today, at 5:30, we got the opportunity to express these concerns to the board. We decided to take John with us so the members of the board could see his face, and hopefully it would help them to think of him as a person and not just a number in the system. We also had Caitlin go with us so she could sit with him while we spoke. We were given 10 minutes to make our presentation then the representative from the administration was given 10 minutes to make his presentation. Members of the board then took turns asking questions of both sides to help them make a decision. We were told they would deliberate privately and then they would either vote on their decision during the open session that followed, or during next week's meeting. So Caitlin and I took John home so he could have dinner and Tommy stayed for the open session to see if they had a decision. He finally called me a few minutes after 7 and said that the board voted 5-2 to deny our appeal. So we had support from two of the board members, just not enough to have John remain at Kilpatrick. I have to be honest, although this decision was not a complete surprise, I was totally devastated by it. I was so in love with John's teacher this year, as well as the nurse at his school, and it completely breaks my heart to know that he will not be able to work with those people again. He learned so many things this year and I have seen a dramatic improvement in his listening skills, his communication skills and even his ability to follow simple commands. On top of that, he is actually learning things like his shapes and colors and even the letters in his name. His teacher found a way to get into his head and to understand him as well as to make him understand her, and I can't believe that he won't have her to learn from any more. Whoever the new teacher may be, no matter how good of a teacher she may be, it will take her some time to figure those things out, and it's not a guarantee that John will even be able to trust her enough to work for her. So instead of building on the things he learned this year and seeing where it can take him, he will be starting all over with a new team of people having to earn his trust. I fear that it will be a lost year and a huge setback for John's overall potential. It is truly shameful to me that the school district would put the business side of the district ahead of meeting student's needs. On top of that news, I also learned tonight that our nurse is not feeling well and would not be able to come in. The agency was unable to find a replacement for her tonight. So after little sleep last night, a full morning of Vacation Bible School, a dentist appointment this afternoon and then the board meeting, I will be getting little sleep again tonight. Tomorrow morning is another day of VBS and then John has an appointment with his ENT in the afternoon. And did I mention that Tommy is leaving tomorrow morning to go to Canada for the rest of the week? He was supposed to leave on Sunday, but stayed the extra day so he could attend the meeting with me. I will need lots of coffee just to get through the day tomorrow, and my emotional state will be very fragile for the rest of the week. My sweet husband did allow me to go to bed early and sleep for 3 hours or so while he was packing and getting ready for his trip. I will lay down on the couch and try to get a little more sleep tonight. Now is when I have to rely on God's strength more than ever. I need it every single day, but there are some days when I am reminded just how much I need it. I have been praying all along for his will to be done, so I choose to believe that he has bigger and better things planned for John. I cannot imagine in my wildest dreams that any school could be better than where he has been, but that is what God does. He goes beyond our wildest imaginations and provides us with more than we can dream of. I am so thankful for a God who loves me like that. Father, please give me strength and courage to face this change. God, you created John and you know his needs even better than I do. Give me peace of mind that you will provide all that John needs and that he will be okay. Use this situation to teach me to rely on you. Thank you for your reminder in Deutoronomy that says you will go before me, not to be afraid. You will never leave me or forsake me. Thank you for friends and family that pray for us every day. And thank you so much for the gift you gave us when you made us John's parents. We are so thankful to have a child that we can worry about and cry for when it seems that life is not fair. Mostly, God, thank you for showing your love for us each and every day. I know that I will be okay with a little time because I know you are still here, carrying me through and providing for me every step of the way.

Sleep Study

Tonight, John and I will be spending the night at Texas Children's for what will be something like his 15th sleep study. And if everything goes well, it could be his last. In the early years, we thought of sleep studies as being very important. Each time he had one, we thought it could mean his last. But after being disappointed over and over again, we came to think of them as just another hurdle on this journey. We stopped getting our hopes up and started to think that he would never be able to get his trach out because of the apnea. We came to realize that the apnea is not going away completely. Yes, it has gotten significantly better. At one time he was having 100's of apnea episodes an hour and as of his last study, he was having only about 5. Praise the Lord for that improvement. But it is unlikely that he will ever be completely rid of the apnea, although not impossible. We know that nothing is impossible for God and if he decided to, he could completely take away the apnea tonight. But we do know that for the last 4 months, John has slept without ventilator support and without oygen support. We have gotten our hopes up again, and tonight is one of those important sleep studies. We have to be at the hospital at 6:30 this evening, and will spend the next hour and a half or two hours getting him all wired up and ready for the study. I will stay over night with him and Tommy will come home. After what will surely be a restless night for me, we will start packing up around 6am and head home. If all goes well, and the doctor feels that he is still capable of getting enough rest without ventilator and oxygen support, we could begin the steps of decanulation (removing the trach). This will be about a 2-3 week process. It will be at least a week before we get results back, so we are looking at the possibility of decanulation sometime in July. But again, that is us being optimistic. It could in fact take a little longer, or it could be decided that he is not ready. Please pray for our family as we go through this process. Most importantly, we want God's will to be done. If it is God's will, then we are more than ready for the trach to come out. Pray that it will be absolutely clear to the doctor which way we should go. Everything with John has been a borderline decision his whole life. This one time, I want it to be clear. I certainly don't want the trach to be removed if he is not ready. Also pray for us tonight. I don't dread the restless night as much as I dread the getting ready part. It is such a tedious process to get all of the electrodes and wires on him. Keeping him still for that long is impossible. And lastly, pray for Tommy and I to maintain strength and peace of mind no matter what the outcome of this sleep study is. Each day is a new challenge. Thanks again for all of your prayer and support over the years. It is through your prayers and God's grace that we have made it this far.

Lucky 7!

Exactly one week ago tomorrow, our sweet baby boy turned 7 years old.  Really?  Has it really been 7 years since we were admitted into the hospital to give birth to this little guy?  Has it really been 7 years since I heard the words "It's a boy" at 9:14 am?  Where has the time gone?

As I wrote about earlier, we had a small get together the weekend of Mother's Day to celebrate with our family.  We decided Saturday would be a great time to celebrate with our friends.  It's always hard for me to decide what kind of party to have for him.  Most of the typical kids parties are out of the question for us because I kind of refuse to have a party that John can't participate in.  I don't do fun jumps because he doesn't like them.  That also typically rules out any kind of indoor inflatable place. The first two years, we invited so many people that we had it at a nearby park.  We reserved a pavilion for a couple of hours and grilled hamburgers and hot dogs while the kids played on the play ground.  One year we had a backyard party after we got John's swing set.  One year we used the indoor playground at our church.  And last year we went to the Little Gym in Katy.  They all were good parties, and John was able to participate minimally.  This year, we decided to do a backyard water party.  I think Tommy was a little skeptical at first, but it actually turned out to be a blast.

We borrowed two blowup water slides from two separate friends.  We put a slip and slide down and we blew up a small pool.  The pool was more for John, since that would be the only part he could participate in, but we found out that all of the kids enjoyed time in the pool.  Of course we also had the swing set.  That was put to good use as well.

I felt really unorganized this year and a week before the party, I still didn't have an idea for a cake.  The theme for the party was sock monkeys (surprise surprise) and I really wanted to try and have some kind of sock monkey cake made.  During a casual conversation with my neighbor, I somehow ended up enlisting her to make cupcakes for me.  Now that it was decided that she was making cupcakes, the search was on to figure out what kind.  It took us several days to finalize the details.  We decided it would be easier to make cupcakes with chocolate icing and to put toppers on them to go with our theme.  So I went online to the website Etsy, and found someone who was selling cute sock monkey cupcake toppers.  I paid her for the file and I was able to print out as many as I needed.  I have to say that it if wasn't for my very creative and helpful neighbor, there may not have been cake of any kind at the party.  She baked and iced all of the cupcakes and she cut out and put together all of the toppers to go in the cupcakes.  She even put together the party favors for the kids.  She definitely wins neighbor of the year award for that.

The party was a huge success.  We grilled burgers and hot dogs and of course had cake and ice cream.  The kids had a blast playing in the water.  I got in the pool with John and he splashed around for a little while.  Then I got him changed into dry clothes and Tommy took him to swing.  Even a few of his teachers from school showed up.  We almost weren't able to get the kids out of the water long enough to eat and open presents.  It was definitely one of the best parties we have put together.  We just might have to make it an annual thing.  Hopefully he will be getting his trach out this summer and next year he'll be able to play more in the pool and some on the slides.

We asked one of our friends if he would bring his camera to the party and take pictures for us.  He did an excellent job.  Go to his website, http://curtislawson.smugmug.com/ and check out his work.  And you can follow the following link below to see pictures from the party.  We are looking forward to another great year with our boy.  Hopefully next year, we'll have even more to celebrate.

http://curtislawson.smugmug.com/Families/JTs-Birthday-Party/

Heart to Heart

I think the last place we left off was right about the time when the MRI was cancelled because the anethesiologist wanted John to have an echocardiogram before he would sedate him for an MRI. I was pretty perturbed about it because I knew he would have a hard time lying still for the echo. But they wouldn't sedate him for an echo. On Tuesday, Caitlin and I (our wonderful summertime nanny) picked John up from school at 1:00 and heading down to TCH to attempt a nonsedated echo. I thought we might be there a while, because my own experience is that echo is behind A LOT. But we didn't wait long at all before they called us back. We got in the room and layed him on the bed and took his shirt off. The first thing he did was put his hands behind his head. That is his sleeping position. Every night, when we put him to bed, he immediately puts his hands behind his head. I then noticed that his diaper was wet and he had wet through his shorts. So I went ahead and changed him and decided to leave his change of clothes off until we were done. So he was layed out on the bed in nothing but a diaper, and he loved it. He wouldn't be a boy if he didn't. I have to say that I thought he did exceptionally well. He never once tried to grab anything, or smear the goo they put on his chest. He did figit a lot and moved his legs around and even bounced his rear end up and down on the bed a few times, but I was pleasantly surprised with how well he did. Finally we were done. So we got him dressed and ready to head home. On our way out, I decided to pop into the pacemaker lab and say hello to my favorite nurses. Isn't it funny that both of them are named Melissa? Anyway, they asked if I had his holter results yet and I said no. So she looked it up for me and said that it was one good looking holter. He had primarily sinus rythmn, no arrythmias and nothing abnormal. She is not used to seeing a holter that good from someone with the last name of Hitt. I called Tommy on the way home and told him that I thought John had done exceptionally well, and he said now we have egg on our face since we made such a big stink about him being sedated for it. The next day, Dr. H called to give me the results. She said that just as I predicted, he had a hard time being still. Really? I thought he was as still as he's going to be and still be awake. I guess we didn't have egg on our face after all. She said that because he wasn't as still as necessary, it wasn't a complete study. But they were able to confirm that there was no hypertrophy and that he would be okay for sedation for the MRI. I'm glad that he had his heart cleared, but at the same time I'm quite frustrated because I knew there was nothing wrong with it and we should have had the MRI done already. Now we have to wait 2 weeks before we get it done. This has been quite the process, but I'm glad our Dr. H is being thorough. On a seperate note, this blog is brought to you courtesy of my iPad. No, the iPad isn't new, but the way I'm typing is. My wonderful husband though that a good Mother's Day present for me would be this nifty iPad case. It is called a Zagg. The case comes with a place for two things. On one side, you put your iPad and on the other, you can put an actual keyboard. And the keyboard has a little ledge where you can prop your iPad up and then are essentially using it as a lap top. A very small laptop. I didn't know if I was going to like it so much, but I do. And now I can blog from anywhere, not just my actual laptop that has a battery life of about 30 minutes. Kind of defeats the purpose of being a laptop. The only downside is that some iPad apps can only be used in portrait mode and you have to take the iPad out of the case for that. And to close out this post, I have to tell you that I am now the mother of a 7 year old. My baby boy had a birthday yesterday. If I think about it in age, it doesn't seem possible for him to be 7. But if I think about it in years, it sometimes feels a lot longer than 7 years. I think that is just because we have gone through so much in those years. But either way, I love him like there is no tomorrow. He had a fun day yesterday and we took him out to dinner last night. We celebrated his birthday with our family earlier this month, and tomorrow we are celebrating with our friends. We are having a water party in our backyard. It should be a lot of fun. I knew this was going to be a busy week, getting ready for the party, but that still didn't stop my body from letting me down. I ended up with bronchitis this week and I have been coughing my head off every day and every night. I haven't had much sleep and I'm running on fumes, but I'm still going. The steroid that the Dr. gave me has turned my face red, but hopefully it starts taking care of my cough SOON. And I have to say that if it wasn't for the help of the best neighbor ever, I wouldn't have gotten everything done. She has all but taken over my party planning and decorations. It will be obvious that I didn't do it, because I'm just not creative, but it will be such a cute party. I can't wait to share with you guys all the fun we have.

Quick Update

I don't really have a lot to update right now. John did have the EEG and EKG along with a holter monitor on Friday last week. The results from the EEG are in. It showed no abnormalities (which is par for the course with him). It showed no signs of seizures either, although that doesn't mean that he hasn't had any. But at least we know his brain is functioning the way it should be for him. It's always good when a test shows no abnormalities, but at the same time, it would be nice to get an explanation for what's going on.

The EKG showed a normal sinus rhythm, but it also showed a possible left and right hypertrophy. I asked what that means. It could mean absolutely nothing, that it is just a variant of normal (meaning normal for him). It could also mean a thickening of the heart wall. My favorite nurse looked back at his only other cardio work up he has had, from his time in the NICU, and the report then said the exact same thing. An echo cardiogram was done then and it showed nothing wrong. But it's been almost 7 years, so the doctor thought it would be a good idea to do another echo. The holter results are still not back, which isn't a big surprise to me. It sometimes take longer than they say to get a report.

He was scheduled to have an MRI today, but the anesthesiologist will not sedate him for an MRI until they get the results back from the echo. Now here is the crazy part. I think John will need to be sedated for an echo. I know how wild he can be and I just don't think he will lay still while they spread goo all over his chest. However, they do not do sedated echos for kids 6 and older. If they do need to be sedated, it has to be under anesthesia, and they say they won't put him under anesthesia until he's had an echo. But he may not be able to have an echo without anesthesia. Confused yet? Yeah, me too. So we are going to try and do a regular, unsedated echo on Tuesday to see if they can get enough information to tell them it's okay to sedate him for an MRI.

So that is a little bit of what I have been dealing with this week. Maybe another time, I'll have enough energy to tell you about what we have been going through with our school district for next year. Needless to say, I still hate May.