Life has been crazy busy and a bit stressful for the H family.
We closed on the new house last week and have been spending a lot of time over there getting it ready. There's so much to be done. Kris has been over there everyday after work and it's starting to catch up to him I think. He was EXHAUSTED yesterday.
Aside from fixing up the house there's so many phone calls to make. I need to find a new school for him, we need to figure out what to do about getting a wheelchair ramp installed, try to get somewhere with the SSI and medicaid and so much more.
I swear it's endless.
Today I've talked to no less then a dozen people and left as many messages...where did I get??
And then there's the happs on the Gage-o front...we've had to change his medication from liquid to pill form in preparation to start the Ketogenic Diet next week.
The felbatol is HUGE horse pills and I obviously need to grind them down so I can push it into his G-tube. He needs 1 1/2 of those 3x a day...I'm day one into it and my hands KILL from trying to grind them and that's the easy pill.
The Depakote has a lovely plastic coating on it that doesn't want to grind at all. He needs 2 of those pills 3x a day.
Where as it used to take me 2 minutes to get his medication ready it's now taking me 15 minutes.
I am slightly frustrated that the Depakote doesn't come in another pill without the coating. I worry about his tube getting clogged if a bigger piece happens to get into the syringe.
For the time being I've been grinding the pill and filling it with water and then soaking whatever is left on the coating off of it and then trying to get the medication into the syringe without getting any of the plastic into it.
It's not easy and there has to be a better way but I'm stumped.
If anyone has any suggestions I'm open!!!
April 28, 2008
Life has been crazy busy and a bit stressful for the H family.
Posted by Shannon at 11:10 AM
April 18, 2008
Earlier tonight my mom was telling me that the school Gage currently attends is going to be undergoing some big changes in the near future so of course I decide to Google and see what I can find on it...I didn't get too far into my search because I came across this...
DNR for Laremont Student
It was in someone's blog and in further search I found a few more articles on it and also a lot of disdain from the general public on this issue.
Oh and it made me mad...so VERY mad.
My first thought was who are these people to judge the decision Katie's parents have made on her behalf??
Do they live with her??
Do they know what her daily struggles are???
No...of course not.
I cannot imagine being faced with the decision to issue a DNR for Gage and I hope I never have to but in the case that I do the last thing I would want is for it to become a public issue.
I understand that it's relatively groundbreaking for a school to honor a DNR and that there is going to be debate on rather or not the parents are making a judgement based on Katie's best interest or in the interest of themselves...and this is what I believe with my whole heart...
Katie's parents have seen their daughter go through things that parents NEVER should have to see. They have had to make hard decisions her entire life.
They know her limit and they know when enough is enough.
We were not given a handbook when we were handed our special children...there is no guide for what to expect or what's going to happen next or two years down the line.
BUT we do have an intuition and I believe our intuition is maybe a bit better than the average parent. We have to learn to read our kids because they cannot tell us what they think or feel. And because of this I honestly believe that her parent's KNEW (when signing the DNR) that if there was to be anything else done to sustain her life that it would NOT be in HER best interest. It would NOT have a positive impact on her well-being and it may end up causing her to suffer in unimaginable ways.
So because they love their daughter with all of their heart they made what they feel is the best decision. And it is probably going to be the hardest and most painful decision of their lives.
I've met Katie a couple of times because she was in Gage's class his first year at Laremont and I also saw Katie and her mom interact with each other and I can say this with the utmost certainty....she LOVES her daughter and every choice she has and will make for her is based on that love.
I know that most people don't have direct contact with children like our Gage or their Katie and so I can't really blame the lack of understanding BUT I do hope you guys at least will remember what I've written the next time you hear about a parent making a hard choice for their Gage or Katie.
Until next time...be well.
P.S. I realize this article was written in the Chicago Tribune in Dec. but I just had to throw in my 2 cents after reading the publics response to it.
To add...I just read through 119 comments on this here...DNR
the majority of the comments are absurd...completely lacking tact and a lot of them are spent debating whether or not she should even be in school and one even spoke about what a waste it is to educate children like ours (I'm FUMING over this one.)
so if you can stomach it go for it.
Posted by Shannon at 7:52 PM
April 11, 2008
Posted by Shannon at 2:02 PM
April 9, 2008
I found out yesterday the Gage and I will be checking into the hospital on May 5th to begin the Ketogenic Diet and to do the long term EEG monitoring.
I am actually really excited about this...I'm hesitant to say that I have a good feeling about it because we've been let down so much in the past...but I do. For reason's unknown to me I really think that this may just work for him.
Maybe I'm holding onto that because I want it so badly. I want him to NOT be in the bracket of kids who will never have control of their seizures. This is the last step before deciding on brain surgery...and I do not want that....so I'm going to hold onto to the hope that this works. I am going to beg and pray that this will be the trick.
Medicine has not worked, the VNS didn't work...this has to...right??
Anyhow..I got the call from the hospital about 5 minutes after I got the call that the inspection on the new house went well and that we are officially closing on April 21st.
So it was good news all around yesterday.
A new house, a new treatment for Gage...I think that things may FINALLY be looking up for my family.
That's all for now guys.
Take care :)
Posted by Shannon at 10:43 AM
April 1, 2008
so I suppose I should do a bit of an update since there is A LOT going on.
First and foremost...we are moving. yeup...my little family and I are going to be moving out of state. Sounds kind of scary right??
Out of state is actually only 5 minutes away. lol
We need to get out of this state for the kiddo.
Il. currently ranks 47 out of the 50 states as far as helping the special needs population. His Dr. and our lawyer both told us to run, run, run to Wi.
So we are.
My parent's offered to help us out and Kris and I decided to take them up on that offer...we found a house last week and put in an offer on it and they accepted it. Our tentative closing date is april 29...two days after my birthday.
We will use the month of May to get the house ready...cleaning, painting, re-doing a couple of the bedroom floors and then if all goes well move into it in June as soon as the kiddo is done with school.
I am so stoked about this...for a lot of reasons.
The first and foremost is the opportunities this will give Gage. He will finally receive the help and support he needs...he will be eligible for equipment and therapies outside of school.
I've already been in contact with a couple of people and they are all waiting on stand-by to help us and him as soon as our address changes.
You couldn't PAY illinois to help us. sad.
But I won't dwell on that and instead I will look forward to what he will now have.
I am also excited about this because we will have ROOM. No longer will we be cramped in a tiny duplex. We will be in a HOUSE. A house with 3 bedrooms on the main floor and a 4th in the finished basement.
No longer will we have 5 kitchen cabinets...we will now have more than we know what to do with.
And to be honest it will just be nice to have our own place.
I do feel a bit overwhelmed by all of this. We have alot to do...packing 6 years worth of stuff, getting the new house ready and then moving in. Once that's done we will come back here and get this place ready for Kris' parent's to sell it.
I also need to find out what Gage's new school will be like.
The one downside is the new school district does not have a school like we have here. I will miss this school more than I can say. It was the one bright spot in Gage's life. The teachers and therapists are amazing. They care about all of the students so much.
Ok...there is still more to update on the kiddo but my fingers hurt.
Next update will be on the Ketogenic Diet.
Until then...have a good one.
Posted by Shannon at 11:52 AM