First Day of First Grade

This was the beautiful smile that greeted me this morning when I told him that today was finally the first day of school. He was so excited.

We've been counting down the days for the last week. 

He started first grade today! 

 I always have much to be grateful for but this year I am especially grateful for the ability for Liam to go to school, to get to participate in activities with kids his age, to be educated in a setting where he is well cared for and loved, to receive therapies while in school...because I know there are many children who don't get the privilege that we are so accustomed to as being a right. 

 

Le surréalisme, c'est moi

Reminders of a life, long since gone, crop up when I least expect it.

How many parents get a note sent home about their child's heart rate, O2 saturation, and respiratory rate with a side of chest compressions?

When I've fallen into this normal and have become relaxed at this life I'm occasionally jerked back to a reality that reminds me that even this normal has unexpected turns that throw me.

Some things for me are just surreal. 

I received a call from staff and a note sent home from the nurse clocking every moment that took place in the nurse's office detailing Liam's 'episode' at school.  I'm thankful for a caring staff, therapists, and a nurse who make sure I'm informed and for the precations they take to make sure Liam is okay. I know he's very well loved and cared for there. 

I must laugh off these moments with Liam, taking it in stride. We are so blessed that Liam hasn't ever been hospitalized since he left the NICU almost 6 years ago. But I know someday that might change and for now, I will bask in the surrealism and enjoy the curves because I am believe I am blessed beyond measure.

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.

Broken Values

We were talking tonight about value and purpose in people with a disability and I was reminded again how important people with disabilities are to this world. Statistics are showing that in Europe, 92% of babies diagnosed with Down's Syndrome are aborted and by 2030 Denmark will have seen the last baby born with this condition. Can you imagine a world with out disabilities? What are we telling our children? What are we valuing as a people, as a society?  It seems to me that we are beginning to leave a legacy that says you have to be perfect to be here, that unless you are free of a disability you are not valued, not worthy, and not wanted.

But that is just not true.

People with disabilities are wanted. What society looks down on our heavenly Father adores. Those whom society mocked, Jesus touched.  He values them all. In Luke 18, Jesus' disciples rebuked the blind beggar, thinking Jesus had more important, better things to do than to speak with him. However, Jesus stopped and he healed that blind man. He took time out for the lowliest of the low and touched him. What Jesus own friends viewed with dismissal, Jesus lifted up.

Liam's buddy B

Liam's life is full of value. I'm not just saying that because I'm his mom, I'm saying that because I truly believe it. This world is a better place because he exists. Not only is his life valuable, he gives value to others. I have seen the joy he brings to others, all with out saying a word. Liam even has a best friend at school.
While Liam may not know he has a best friend, Liam has brought value to B's life because B values him as a best friend and B brings value to Liam's life because he loves on him unconditionally and with no pretenses. I would say that's a very worthwhile, valuable relationship right there. Both of them, full of worth, and very loved, even in their brokenness.

But most of all, God loves and values Liam very much. In the scriptures God is always on "Team Weak". In the OT God even displays his wrath against anyone taking advantage of widows or orphans by putting them to the sword. He takes it seriously that we should be caring for those less fortunate. In Psalm 82: 3,4 God presses us to defend the weak and fatherless, to maintain the rights of the poor and the oppressed, to rescue the weak and deliver them from the wicked. That sounds to me like a God who cares very much for people with special needs, doesn't it?

In Matthew 25: 34-46 Jesus speaks of the separation of the sheep and the goats. He spoke about giving something to drink to someone thirsty, food to those who hunger, clothes to the needy, etc... He explains that when we do that for the least among us we have done that for him.  It is supposed to be an honor to help those who can't help themselves. God is compassionate and we are to be as well. God created us in his own image, not for us to feel superior to one another or look down on those less fortunate. We are to lift them up, love them, feed and clothe them, and value them because each person has God given worth. We mimic God when we mimic Christ's service to others. And it is in the lowly, the weak, and the disabled that we see purpose beyond ourselves, purpose that brings us closer to Christ and shows us how valuable it is to have a world full of broken disabled people. I wouldn't want a world with out it.

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.

Things change

We've had a change up of educators/therapists this year for Liam. The new school year started off with a bang with Irene barreling through. It delayed for a week us getting any services. We are just now this week settling into a regular routine.

Liam has a new occupational therapist and a new itinerant preschool teacher. I think both of them are going to be a great fit. Liam had his first sessions with both of them this week and he did so good.  I was so proud of him. It's so hard for him to use his arms yet he was hitting his switches and buttons just like they asked.And he was exhibiting more control doing it than I've ever seen.

I'm hoping a for a great year for him. We got off to a very slow start last year because Liam didn't even start receiving services until December. We felt like we were finally diving in when the school year ended and we stopped receiving all services.

So, lift up your glass with me and toast to a new year full of new ideas and possibilities for Liam. I know we are both ready!

Blind but yet he sees

Today Liam had a combined therapy session with his OT and PT from school. They come to our home and work with him here. Our PT was holding him while the OT was singing songs and using a powerpoint presentation on the computer with different colors of fish. Then she held up two pictures of different colored dots. Each time she would ask Liam where a color was and each time he picked the right color. And he did it quick. It was one of those moments where we all looked around and thought, 'I'm so glad we were all here to see this together!".

The OT finished up with a color I have never taught Liam, purple. She paired it with orange, which Liam does know, and asked him where it was. And he got it!

I was so very proud of the little man!

First school meeting already?

I had my first meeting yesterday with the school about Liam. Because Liam will be 3 in November, he qualifies to receive services through the school system. While I am leery as to how helpful they could possibly be, I am open to the idea of Liam going and getting some good therapy/playtime/learning time in.

The meeting was just that. I met them and they met us. They already had some of Liam's information in the system so I only needed to update what they had. And they added in what they saw in person.

They got to see Liam get upset when I stopped reading and he wanted me to continue (he tries to communicate his wants). They got to see him bang on the drum when they put it in front of him . They got to see him 'talking' (he is so close to saying hi or hey). They got to see him trying to roll over. All in all, it wasn't too bad. They got to see that there's a little boy in there trying to get out.

We have our big preschool evaluation on October 6th. We'll meet with everyone and he will have all of the evals taken from psych to speech and everything in between.And he supposedly is slated to start 'school' Dec 8th!