Friday, December 24, 2010

We got the pump!!!!

Jimmy got his pump yesterday! I'll post more details on later today or during the week, but overall, it was going great up until we actually had to insert the "cannula". We practiced first - Jimmy and Jim did it to the kangaroo they had first, then I did it to Jimmy's cousin, then Jenna and my sister did it to me. It's quick, painless, and the only thing you sense is the small mechanism being pressed to your skin, then you hear a click, and I actually felt nothing! Joey (cousin) said that the needles him and Jimmy currently use for their insulin is worse than the insertion of the cannula (that's that the little tube that stays under his skin connected to a long thin tube that connects to the pump which holds the insulin. So, when it was time for Jimmy's turn, lets just say that it was a traumatic experience for all involved. He resisted so strongly, loudly and physically, that what I really wanted to do was scoop him up and hug him and take him home. But I know the pump will be better for him in the long run. I had to hold back my tears while I was holding him down (and the nurse and Jim and Joey as well.) After about 10 minutes of that, we got it in, and he continued to sob and scream for an hour all while trying to rip out the site. It was horrible... Until I took him to blockbuster to get a movie and he conned me into 3 movies AND popcorn AND a diet coke!!! I think if he had asked for a pony I would have caved, too.

Today, he's fine, and he's actually entering the numbers into the pump and delivering the "insulin" which is actually saline for the next 5 days while we learn the ins and outs and while simultaneously giving him his real shots.


More later... I'm off to get a few last minute Christmas items!!
Merry Christmas!
Peace,
June

Monday, December 20, 2010

It's been a while...




Oh my goodness - it's only 3 days until the pump! So much is going on lately, that it's been over a month since my last post.


Here are some updates via emails to family and friends...




November 8: email to family & friends - see the photos!!!
Jimmy's Kindergarten Photo!! (Can't believe he's 6!!)Enjoy! Jenna's 5th grade photo!! She'll be 11 in January!! Where does the time go???

November 15: email to the parents in charge of the Winter Wonderland event (after Jimmy had a disastrous time at the Halloween Part event...
Hi there!
Jenna and I just had a long talk with Jimmy, and he really wants to go to Winter Wonderland -- and promises to not get scared and want to leave like he did at the Halloween Party!!!

I still feel so badly about having to leave when he was having a "melt down". I guess he just got overwhelmed... So sorry about having to bring him home that night, and as a result, not be able to finish helping out at the event.

So, we're going to attempt this again... Both of my kids (Jenna and Jimmy) are going this time. Jenna says she will take care of him (she has a knack for that), so that I can actually volunteer!! I think it will work this time (keeping my fingers crossed, though!)

Sign me up to volunteer, but if you could make it something flexible I'd really appreciate it. I don't want to leave a table unattended or to leave someone without help in the event he has a meltdown again (or low or high blood sugar and needs me). Also, if you could make it so that I could volunteer a little after it begins, so that I can make sure Jimmy is acclimated, and "good to go" before I leave him with Jenna so I can help out, that would be great. (Sorry for all the conditions... I really don't mean to be a pain - but if Jimmy is "high" or "low" with his blood glucose numbers, it affects his demeanor and disposition... it could be the difference between running smoothly or a disaster...)

Thanks so much in advance!
I'm sending in the form and check with Jenna tomorrow.
Thanks for all you do for the kids!
June
(NOTE - he couldn't handle this event either - poor kid!)

November 18: email to the Pupil Assistant Counselor, Jimmy's Teacher and Nurse
Hi there,
My son Jimmy (in Mrs. R's Kindergarten class) had somewhat of a meltdown today.
It's happened a few other times as well...
The first time it happened was for Kindergarten Orientation in May. He wouldn't go into the classroom for the visit. My husband went with him, while I stayed for the presentation. It was quite a scene... I think two teachers were on hand to help if I remember correctly. He cried, refused to talk, got real stubborn etc... His blood sugar was high which can make him a bit agitated, but I'm not sure that was the reason...
The next time I remember it happening was for the visitation day in August, when he was supposed to go to Mrs. R's class while the parents stayed downstairs and talked with Mr. H. He refused to go unless I went with him, and even then he refused to participate.
It happened in October in school - I can't remember the circumstances, but maybe Danielle or Andrea can fill you in?
And then today. He woke up on the wrong side of the bed, and didn't talk to me all morning. His blood sugar was a tad high, but I don't think this was diabetes related. I tried to drop him off as usual (still hadn't talked to me yet) and he just clung to me to the point where I had to bring him to Andrea. I heard him crying all the way down the hall when I left... It's as if something's wrong, but he doesn't know what it is... I don't know if he can't communicate with me what's wrong, or if he won't.
I wasn't in the classroom today, but I'm sure it was extremely disruptive to all involved. I don't have a reason as to why it was even sparked...
I'm emailing you both since I'm not sure who takes care of Roosevelt Kindergartners...
If you have any strategies, or any information on how to help Jimmy with this, I'd really appreciate it. If you can take some time with meet with me, I'd really appreciate it. Before school, after school, lunch, prep, - you name it.
Thanks so much in advance!
June Karpowich
Response from his teacher:
I just was working with him and we talked a little. He said he wanted his mom. He said he was not feeling good.
I told him that that it is ok to want your mom when you don't feel good but you have to use your words and that he cant get upset how he did because we don't know how to help him. He smiled and said ok. But I would love for us to have a plan on what to do and see where it is coming from.

November 24: email sent to the same people above after a productive and wonderful meeting
Thank you so very much for taking the time for Jimmy yesterday. I appreciate your insights, suggestions and help!
Last night, he woke up at about midnight, called for me, and wanted a drink of water... He's got bunk beds, so he asked me to stay for a minute. He went right back to sleep, and evidently so did I... I woke up an hour or so later to the sound of him grinding his teeth... He did it a lot... It's an awful sound.
So, I did exactly what I'm not supposed to do - I "googled" it this morning, and here's the first thing I read...
1. Stress
Stress is the most common reason for bruxism. Most doctors suppose that stress is the primary cause of teeth grinding during sleep. Stress can disrupt a person's sleeping cycle. If a particular sleeping pattern is disrupted, the person ends up clenching their teeth unconsciously and intermittently during sleep. This is where a lot of researchers are currently focusing on, as this explanation is the one most common.
2. Frustration and suppressed anger
There are many instances that a person clenches his fist or teeth if he is very angry with somebody or something. Many psychologists believe that this is the reason why people
clench their teeth during the day. Suppressed anger is wrath a person can't let out. This can be quite hard to manage.
I had to google it, huh??? According to webmd, it can also me mal-aligned teeth as well. I'll bring him to the dentist (we're due to go in December or January for our regular cleanings.) But with Jimmy's episodes lately, I'm wondering if it's the "stress/frustration & suppressed anger."
In the meantime, do any of you have experience in the "teeth grinding" department? Am I being overly hyper being that it was the first time I heard it?
The Social Worker at the Molly Center left me a message yesterday, then I left her a message... we're playing phone tag I guess. I'll call again today.
I'll keep you posted.
In the meantime, when is the next "Primary Project" due to start, and is it an appropriate next step for him?
Thanks again so much for all you're doing for Jimmy! And Danielle, sounds like Zippy was a hit yesterday! Like it was tailor made for Jimmy! He didn't tell me anything about it (but he's usually very tight lipped about his day anyway.) But from your email, it really sounds like you got through to him! What a great program!! (NOTE - email below about Zippy)
Thanks so much
June

December 8: email to Jenna's softball coach - we just can't do everything...
Hi Coach, It looks like a great opportunity, but unfortunately I think we have to pass...We're beginning Jimmy on the insulin pump on December 23rd which, from what we understand, is going to take some getting used to - but will be much better in the long run. We just can't commit at this time...

December 15: email to the nurse in charge at the Molly Center and the pump rep (Molly's brother)
Hi Rachel & Matt,We're so excited to start the pump! It came in the mail and Jimmy was so excited to open up the box... He's nervous, too - but I guess that is to be expected. Rebecca came to Jimmy's school (she's wonderful!) and trained his nurse, Andrea (and her back up nurses - which was really good since Andrea fractured her foot and will be out for 3-4 weeks!) We're in a wonderful district, so lucky for us that they love Jimmy and were willing to stay after school and learn all they need to know!Rachel, We'll be there on the 23rd at either 2 or 3 pm, and I can't remember the 2nd appt we made for a few days after that.Would you be so kind as to check and let us know?Thanks so much in advance, and Happy Holidays!June & Jim Karpowich



Response from Matt:
Hi June-
Awesome news...I am so happy that Jimmy was excited when he opened it. Also, Rebecca did tell me that she went to the school for an education session, fantastic. We can get Andrea up to speed when she is better.
I look forward to the successes that Jimmy will have on the pump!
Thanks again. Please do not hesitate to call me or email me with anything.
Matt
Response from Rachel:
Good Morning,
So happy James is into this! I dont think we made a official appt for the insulin start. It can be betweem the 27th-30th. We can wait to see how he does on Thursday! Unless you have an idea of when you want to come back. I would give him at least the 5 days on saline to get used to the pump! The only day i would not be available is the morning of the 29th (Wednesday) But OK in the afternoon if that is the day you want.
Thanks
Rachel
So, here we are... The saga continues - we're so very nervous and excited about the pump on Thursday!
Peace,
June