On to 1st

We are two full weeks out from the last day of kindergarten and Liam is already bored. He cried on the last day of school. It could have been the loop of Pharrel Williams "Happy" being blasted through the intercom system on continual loop, but I'm pretty sure he was sad that the year was coming to an end.

First & last day of school. Mostly just longer hair, and a crappy pic but otherwise looks the same.

We had an IEP meeting the last week of school and I learned a few things about how Liam's year and goals were going. I was surprised to hear that some goals were met and excited to hear that he was holding his head in prone for 5 seconds at a time. That is so very, very hard for him. The most important was his communication skills and seeing the progress he has made and how they are going to move forward this next year. He's got a good team on board working with the PODD communication system and will be implementing them at the beginning of the year. His aid will be wearing pictures in order to provide constant opportunities for Liam to see and use the pictures.

Liam's one to one aid was a fabulous fit for him and she worked very hard with him and for him.  She knows him really well, can read his cues, and makes sure he gets to participate and be an active member of his class. It's not a definite that she will be hired back this next year and if she's not I will be one irate momma. It's in Liam's IEP that he requires a one to one and she's perfect so we are praying she gets to come back. It doesn't make sense not to hire her back.

The dynamic duo- and look at that awesome t-shirt!

We are 82% funded for our stem cell trip!  If we keep on the path we are on it will be Sept before we will be able to go, but that's just fine. It's still early in the year and God's timing is always perfect. Please pray we continue to sell the remaining tees and if you'd like to donate anything at all, you can click on the link below. It goes right to Liam's account for his medical trip only.

Thanks for all your prayers, for following along, and the kind words of your support. Liam doesn't understand what all everyone has done to make his life better, but his family will never forget! :)

Lessons Learned

A host of missteps led to Liam being in the ER for over 6 hours last week. Simply because of a pulled g-tube.  I've learned from my mistakes, the school has learned from theirs, and nothing like what occurred will ever happen like that again.

Liam pulled his gtube out at school while he was being fed. It's not a big deal, you use a syringe and easily deflate the balloon and pop it back in. The school nurse, however, failed to notify me until 2 hours had passed. That is still not a big deal because Liam has had his g-tube for four years and there is no way his stoma is going to close up that fast. I was about a 30 minute drive away from school when I found out and I assumed when I was notified that it had just popped out. They didn't say it had been out for hours. I didn't bring anything with me to school to put it back in and figured I'd just take him home and do it there in privacy.

When I got to the school I wanted to put everyone at ease about it not being a big deal. When I walked in the door I immediately told them it was ok, no biggie, and that I could just pop it in myself. They were thrilled to hear that all was good until I told them it had to be put back in within an hour. At that point their eyes got huge. They told me it had been out for over two. I grabbed Liam and headed out the door telling them we were probably on our way to the ER. 

I got home and was unable to get his used gtube in. I didn't have a spare (thanks to my med supply company) but I did have a foley catheter. I put the foley in with no problems. I just couldn't get the squishy old gtube to push through his stoma. Liam looked uncomfortable and I didn't want to inflict too much pain on him. So, I figured, I would just go to urgent care, have them numb his stoma and then push the gtube in. WRONG.  Unbeknownst to me, urgent care was useless and they don't help you at all if it involves a gtube.

When I got to urgent care they checked Liam's O2. He was satting low because he was coughing on his spit. The check in nurse got nervous at his low levels even thought I told her he doesn't require oxygen, he wasn't sick and it was just his spit at the back of his throat. She put him on O2, called for the ER nurse to come get us, and they whisked us to a bed.

Doesn't he look cute satting in the 80's?

And all I wanted was numbing cream.

Pulse oxes are pointless-just get me some lidocaine peeps.

Once in the ER, we were checked and spoke with the nurse about what was needed. Of course, we got the standard response, "The Dr. will be in just as soon as he can." 

I'm not going to go into all the details because it's a very looooong story of me getting mad at the nurse station because we had seen no one in hours, demanding my own foley to put in myself along with numbing cream, getting mad at the nurses station again when we still didn't get the supplies I needed, and then finally a Dr. coming in who had never seen a gtube like ours, had no idea as to how it went in and stayed in and was essentially no help at all. FIVE HOURS LATER!

Spongebob is the bomb.

If you all don't believe in God yet from reading the miracles that have taken place in our lives, let me show you one more:

A friend happened to get called in. He checked the admittance list for the ER and saw Liam's name. He came down to check on us and see why we were there. When he saw the situation, the stupidity of what needed to be done and what wasn't, that I was about to lose it after being there now for SIX hours, he said he had a Dr that he could call who could get us fixed up and out of there in minutes.

This guy did in a few minutes what the stupid ER couldn't in over six hours: get Liam's gtube in. All I needed, at hour ONE was some lidocaine.  That was the only reason I went to urgent care. I was trying to make it a bit easier on Liam to get the gtube back in.  What that ended up costing me was 7 hours at the hospital, a few lessons learned, and a little boy with a bloody gtube site. But what a gift it was when God sent a friend in after hours who knew exactly what to do. He does take care of us when you look to find it.

Holding Liam's stoma open with a lidocaine covered swab.

Liam's gorgeous, non leaking, perfect little stoma is now suffering from granulation tissue problems. I had to put silver nitrate on it last night and now the whole area is black from the application and red from the chemical burn of it.  I'm praying that the tissue issue gets resolved quickly and his little stoma gets back to looking perfect. We may have to have a session of myofacial release to get everything back to normal. Every Dr who has ever seen his gtube site comments on how fantastic it looks but right now it's ugly and raw. Luckily, Liam is such a trooper and other than the initial discomfort of trying to get the old one back in he hasn't complained a bit.

What lessons did I learn?

1) Make sure the nurse knows to notify me immediately if anything occurs like that again. 

2) Always have a back up gtube on hand. I had quit getting them because I don't change them out very often. They were just piling up in our closet. Once I went through the supply I had on hand I called to order more and they would only give me one even though I hadn't received one in a year. That left us with no back up. So, instead of saving insurance and medicaid money, I will just have them deliver them every 3 months whether I change them or not so I never have to worry about having a back up.

3) Urgent Care and the ER are of absolutely no help if you are dealing with a gtube issue. Urgent care doesn't even touch them. The ER carries no gtubes, the Dr's have no idea how one goes in, and if you don't have your own supply of equipment you will get a foley and get sent on your way to your gastroenterologist. None of that is helpful to a mom who has been changing out her own son's gtubes for 4 years. I can do all that myself with out them.

4) Even at times such as these, when nothing is as simple as it should be, when nothing is going right, and your anxiety is mounting over a banal issue, God is there, seeing that you are covered, watched over, and provided for.

Some lessons are learned the hard way. While we might wish the lesson didn't require of us what it took, nevertheless they are lessons that won't require repeating.

A month of changes

God has been so good to us during this season of changes. Liam being in school was always a bad idea when we first considered it and having a team on board that thought he could do it along with the positive changes we saw take place in Liam over the last year brought us to the decision that we should try it.

I am truly ecstatic to see Liam loving it. Liam only goes 3 1/2 hours a day and last week when I picked him up, wheeled him out to the truck, and opened his door, he started crying. He had full on tears with the rumpled up face. Liam pretty much never cries so I asked him if he was upset about leaving school and if he wanted to go back inside. He immediately stopped crying and looked at me. I told him he could have five more minutes and I wheeled him back inside where we surprised everyone by showing back up.

The staff was so happy to hear the story and it makes this momma's heart glad to know that he loves being there as much as he does and they love having him there. To know that your child is loved on by others is such a gift and when dealing with the needs Liam has, it's a special soul that looks past it all and loves on him anyway. Honestly, we have been truly blessed to have a lot of caring people in Liam's life, from church, to friends, to school, Liam's challenges have been overlooked by many an adult and they have loved on him in spite of them.

Math lesson

Circle time around the board for math

Liam's awesome one to one mentor Ronnie. He LOVES her.

I had Liam's annual IEP yesterday and it went really well. I think the goals they have are well thought out and the amount of interaction between therapists looks promising. One of the biggest changes for us is that because of Liam's success in the room and his desire to be there we are increasing his time to 4 hours 15 min a day.  Liam will start his day at 8:45 and end at 1:00.  I am really happy about the increase because when I would pick Liam up at 12:30 he would be in the middle of the math lesson and I always feel bad about having him leave before it's over. I would be taking him out of the circle and interrupting his lesson. It's probably part of the reason he got so upset at me the other day.

 

Liam's stamped tree

Liam was really proud of this cat mask.  He chose brown ears and the orange for the face and whenever I talk to him about it he just grins his silly grin. His teacher wasn't sure he really wanted brown because everyone else was choosing black but he told her twice that that was what he wanted and I think he's super proud of himself for making his own choices and seeing the results of it. 

Liam is having a great time. He's learning a lot. He's engaged with his teachers, therapists, and peers and he loves being there.  I'm so grateful for the support we are receiving and for the mentor God provided. It's truly been a wonderful season of change.

What a week!

Ready to go!

First day of school smiles!

Liam started Kindergarten!

I can't believe it.

I really never thought he would be capable of being in a school setting with the challenges he faces. I know the schools are supposed to help accomodate as best they can but with Liam's severe vomiting coupled with his multiple disabilities, school didn't seem like a good idea, ever. Not only that, I don't enjoy watching other children stare at my son. I'm used to it and I understand why it happens, but I still don't enjoy it. So having him in that environment was not my ideal.

But as Liam grew older and his desire to learn along with our knowledge of his abilities came the realization that maybe being in school would be good for him.  Shawn was not on board as he is felt the way I did; school was just not the best place for a child with so many issues and taunting/teasing about his challenges was not something we as parents want to endure on his behalf. 

At the big meeting at the end of last school year it was determined we would give it a go and Liam would attend for 3 1/2 hours a day, from 9-12:30. 

I was scheduled to stay for 90 minutes the first day but ended up staying the whole time. It worked out well because I was able to show his one-to-one all the fun things he likes to do and I got to know her pretty well.
She's very attentive, loves working with Liam, and will be right there to help him the entire time.

The second day I dropped him off and when I walked away it dawned on me that I had never left Liam like that before. He's been left with family or close family friends before but I've never left him with what are essentially strangers. I've never even been allowed to leave him when he has therapy.

I almost had no idea what to do with myself for the 3 1/2 hours.

The day must have gone fabulous because when I picked Liam up he got mad at me when I went to put him in his care seat. He fought me and arched out of his seat. I couldn't figure out what he was doing and why when it hit me that he might be upset about having to leave school. I told him he would be able to go back again tomorrow and he settle down in the seat.  Next day, he did the same thing when I picked him up. By the end of the week he was adjusting to his schedule and wouldn't get upset when we left.

He finished out his first week a huge success. No vomiting and minimal drooling. Yay!!

Last night, however, he started coughing in the middle of the night and he is now running a fever. It's been a concern of mine about how he would do this school year with the exposure to all the new viruses. He's always been a very healthy guy with only 1 or 2 colds a year. And here we are the first week in and he's already sick. =(

I am really excited for the routine and structure for Liam because it's really going to help him with his skills but if he gets sick a lot it will affect his outcomes.

So here's praying for a healthy, positive, and productive year for this awesome little man!

It's decided...

I am grateful to have had a fantastic preschool teacher for Liam for the last two years who was not only comfortable with kids as immensely challenging as Liam is, but also was willing to try new things, ask questions, and say she didn't know the answers but would find them.

We are going to dearly miss Ms. Lori next year. Liam will be leaving the preschool program and will be heading to Kindergarten. I posted before about how Liam really could go either way with his education; continue it at home having therapists come in or have him try school in a special ed classroom where he would be able to receive his services at school.

After a 2 1/2 hour IEP is was determined easily and without issue that Liam would benefit most in a classroom with his own 1:1. We are going to start out slow and Liam will only be going from 9:00-12:30. But even with such a short time, it is imperative that Liam have the appropriate help necessary in order to help him progress and grow not only socially but educationally as well. He desires to play and learn but can't quite accomplish tasks without the help of two people for the most part.

I have no idea who the one to one will be but I am praying now that the Lord would send someone amazing into his path. Someone whom Liam can learn from and who can learn from Liam.  I am not joking when I say Liam teaches everyone he meets. Everyone who works with him says that. He truly does teach us all
and this next school year will be a learning experience for everyone all around.

Bye Bye Preschool

Liam is hitting a big milestone this month. He is finishing up his preschool years and will be leaving behind the slew of therapists and teachers we've come to know and love over the last few years. We will be saying good-bye and starting a new adventure with new therapists and new teachers when he starts KINDERGARTEN this fall.

We have had some tough decisions to make as to what is in the best interests of Liam for his education. I have felt pressure to put Liam in the school setting for numerous reasons, with the most important reason being that he would be able to learn (which he loves to do) and be visited by therapists better than what he could receive at home. If we decided to homeschool Liam like we do our other kids, Liam would only be able to receive minimal services from already overloaded therapists who would have to take their primary caseloads first then fit Liam in if they could. UNLESS Liam would be determined medically unfit for school, then he would be a primary student for them and would receive proper amounts of services.

Liam isn't medically fragile though. It can be said that there is a definite safety concern because he does have an airway issue that remains a high concern for me. He also has a tiny issue I might have mentioned here before: he throws up a lot. Last year, I felt that the teachers and therapists didn't feel Liam needed a one on one and was told it's very unlikely he would get one (that it's very rare) which had me very, very concerned about sending him off to kindergarten. After that IEP I let the school year transpire with out much concern about kindergarten. I knew I wouldn't feel safe leaving Liam without a one on one and figured I would be telling them as much when the end of this year came around.

We are now gearing up for a final big meeting to prepare everyone for Liam's arrival. There are a lot of reports to go through. His file is huge. He isn't a simple placement. He could honestly go either way: home bound or in a special needs classroom. We could surely have the airway concern and vomiting issue be such an issue that it allows Liam to be home bound. Or, we could insist on the one one one so that Liam is getting the proper care while receiving an education that Liam deserves.

However we decide, there has been numerous therapists, teachers, psychologists, and us parents going over all of his files and wanting to do what's best for Liam.