I once again come to this blog thinking where do I begin... The last entry I said so much has happened in our life lately that keeping up with this has been difficult and life has thrown us a few more curve balls since then.
We are still having technology issues with Evan's equipment and Phonak & Oticon have not been the most helpful in trying to figure out why their equipment is not working together to benefit my child. So far in my opinion Oticon is the worse... Our school has been amazing in working so tirelessly with very little knowledge on equipment to get them to work. Our Oral deaf school is contracted by our school for services to help Evan and the staff and the majority of it has been laid on their shoulders to try and figure this out. Evan has gotten to the point where he would much prefer to not wear the FM due to the fact it keeps shutting down his hearing aids. This has not been easy for me since as a mom I advocated so hard 4 years ago to get him a personal FM. He does have access to a Soundfield for every other educational setting but I also know he is still missing things. I am really glad that we have our TOD coming in every day and helping him out. He really is succeeding but disappointing to me on how much more further he could be if we could get his equipment working properly. And to be quite honest I have lost my patience with this and the feeling of helplessness is starting to set in and I am sure glad that Christmas break is coming soon. The fortunate situation is that I received a blessing from the good Lord above in a child that loves life and is willing to deal with about any situation he is handed which makes me the lucky one to be his mom. Me, Robbie & Evan also went to the eye doctor about a month ago and I can honestly say this is not an area I have stayed on top of for Evan. It just seemed so minor in the grand scheme of his plan and all of his other medical issues. Anyway of course Robbie has 20/20 vision, I have to go back to glasses (which really I should have been wearing all along) and the doc tells me Evan is far sighted in both of his eyes and she is almost 100% sure he will have to have glasses by the end of next year. I just cried!! As if my little man doesn't have enough to deal with concerning his hearing loss, asthma, heart condition and kidney condition now we must learn to deal with glasses. Yep I cried for a couple of days then decided who cares! I again have this amazing boy who lights up the world and has already done more amazing things in this world in just 6 years that I can hardly wait to see what else he does.
My brother in law and his wife were blessed with a new baby boy a little over a week ago. Ethan Paul Hine does have many challenges to overcome. He is having to spend some time in the NICU at Riley Children's Hospital so I haven't been able to official meet him in person but I know that he is going to do awesome things in this world. He has been able to bring out emotions in people that I have never seen before and brought so many people to rely on their faith and that God has a plan for everybody and only really gives you as much as He believes you can handle, not what you think you can handle, because a lot of us are a lot stronger than we give ourselves credit for. I mean if you would have told me when I was 14 years old that I would fall in love w/this boy have a child w/him at 17, marry him at 20, have another child with him that has disabilities and be married for 10 years at the age of 30 I would have completely laughed in your face and told you that you must have me confused with someone else.. But I am here to attest to the fact that is exactly my life right now.
To add to our "exciting" life Robbie's appendix decided it needed to come out this week. He came home from swim practice on Monday complaining of a pain in his stomach but we just thought it was a strained muscle due to the fact that he has never done swimming before as a sport. On Tuesday he complained a little more but we didn't see any change in his attitude or appetite so I gave him some Advil and sent him to bed. Wednesday morning he continued to say he just didn't feel right so I sent him to school and said I would get an appointment with the pediatrician and I went back to bed b/c I wasn't feeling that great. Bret called me and said the school had Robbie in the clinic and that I needed to come and pick him up. I got there and he was white as a ghost and he said he had gotten sick twice so off to the pediatricians office we went and he started walking crouched over b/c the pain was getting worse and the doctor said you need to go to the ER to get x-rays and then I started remembering what I felt like when my appendix was going bad. Within and 1 1/2 at the ER my son was being rolled in to the Post-Op room to get prepped for surgery. They caught it just in time so it didn't rupture and after about 6 hours from the minute we walked into the ER we were walking out w/a much happier 13 yr old and minus an appendix.
Do you see why I haven't had time to update?? Never a dull moment in our lives! We are truly blessed!
1 comment:
Talk about a busy week for you guys- I can see why you don't have time to update! Bless little Ethan, he's such a fighter.
We'll probably be dealing with glasses in a couple of years- we know Nolan is a little nearsighted, but won't need glasses until he's in elementary school (it is mild myopia). Sometimes I wonder if those little ears will be able to handle all the equipment!
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