Monthly Archives: May 2015

Disney here we come!

Special needs children

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Well, it looks like this is actually happening. The Jolicoeurs are going to Disney World!!  I haven’t told many people about this trip….in fact we didn’t even tell our 5 year old we were going until this afternoon. (And unfortunately we didn’t get the reaction we were hoping for…womp womp.)

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A little over a month ago I was approached by a dear friend who offered us their condo for a week in Orlando. I felt like I had just won the lottery… but we didn’t say yes right away. We were hesitant for several reasons. First- traveling with Gideon requires a lot. Second- even though our room cost was covered, we didn’t want to eat up our humble savings on airfare and park tickets.

After talking about it for a couple of weeks we decided to put off some projects around our house and use that money to make the trip. A few days later we were surprised when a completely different family came forward and offered us a gift that covered the cost of our airfare.

So needless to say, Disney here we come!

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We are so excited to take this trip. This will be Gideon’s first time on a plane and Laynie’s second. So we welcome & appreciate your prayers. 😉

Currently our 4:45 pm departure was delayed until 6:55 pm. But then the weather further pushed back our depature until 8:05 pm. We are praying for clear skies and no more delays. We have been here at the airport since 2:30 pm and Laynie has been more impatient than her 2 year old brother. Go figure. Lol.

I’d like to publicly thank these two families for their generosity and thoughtfulness. You have blessed us tremendously and we are forever grateful.

Look for photos on our Life With a Happy Heart Facebook page throughout the week!!

Disney here we come!

(Shout out to Mrs. Hoppe for getting us those fabulous, matching t-shirts!!)

Gideon got new equipment

Parenting, Special needs children

The past two months have been very exciting for us as certain plans have come to fruition. After much paperwork and patience, Gideon got new equipment!

Back in April Gideon received a tomato sitter with a rolling base. All thanks to Mr. Kane’s 3rd grade class and DARS. Mr. Kane’s kiddos raised money for Gideon to get this special chair back in December. But before we purchased it, we found out that DARS was going to cover the sitter and base, but not the rolling base that we wanted. So we waited on DARS (their paperwork process can be lengthy, but we are grateful). Then last month, when we got the call that DARS had the chair, we purchased the base with wheels on our own-thanks to Mr. Kane’s class.

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This sitter has been so wonderful for Gideon and our family. Now he can sit and play without having to hold himself in a sitting position. It is also great for mine and Kevin’s parents. It’s hard to carry Gideon across the house now that he’s getting so big. This allows us to roll him from room to room if we need to. He’s almost outgrown his high chair, but I’m not worried about that now, because his sitter works the same way. Overall, it just makes interacting with him easy.

Then a few days ago we got a call from our medical supply rep, Susan. She has been working her butt off (since October) to get Gideon an adaptive stroller. I’ll spare you the details, but just know that this process was (and probably always will be) grueling. So when she called us Wednesday, she was very excited to tell us that it had been delivered…just in time for our surprise family vacation next week!!  (She pulled some major strings!! Thank you Susan!!)

She brought it over late Wednesday and this is what it looks like.

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You may not be able to tell from the photos, but this stroller is AWESOME!! First of all, notice how the seating system supports Gideon? That is huge! Another cool feature is that the chair turns so that Gideon can face forwards or backwards. It also tilts AND reclines!!!! This is a great feature for me because I can change his diaper while he’s in the stroller. That means a lot since he will only get bigger and outgrow the bathroom changing stations.

Laynie is excited because the push bars lower down so she is able to push him like the big sister that she is. The stroller also came with a tray that we can use for feedings or play. Did I mention it as a zero turn radius?!?!? Seriously, it is overall amazing. The only down side is that it is harder to take apart and put in my car…mostly because it’s heavy and my “trunk” is small….stupid jeep compass, what was I thinking??

All that said, we are so grateful for these new pieces of equipment. They have already made life so much easier for us and for Gideon. I just want to say thank you to everyone who has been involved in making life more enjoyable for our son. There are so many who are involved in my little boy’s life- therapists, reps, doctors, as well as friends, family and complete strangers who just love our boy….thank you. Thank you for loving him and us well. Not every family has the community support that we do and I hope you all know that that is something we do not take for granted.

Blessings

 

Gideon’s hearing has gotten worse

Faith & Hope

Gideon’s hearing has gotten worse.

Please forgive me in advance, because what you are about to read is my very very very limited understanding of how all this works…

So a week ago, we took our son for another ABR; he gets one every six months because of his genetic disorder. ABR stands for Auditory Brain Repsonse and to put it simply, it is a hearing test where Gideon has to be sedated. The last time he had this test done was back in November and we were excited because his hearing results showed then to be stable- meaning that he had not lost any more hearing.

But that wasn’t the case this time around. Unfortunately, you can see from the results below, that Gideon’s hearing has gotten worse.

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The picture on the left shows the results from November and next to it are his results from last week. The “O” represents his right ear and the “X” represents his left ear. So according to the this, he has lost some hearing in his left ear, but more significantly in his right.

Before the ABR, the audiologist always does a Tympanometry to make sure there is no fluid behind the ear drums, as this can effect the results. Because Gideon had been sick in April, the tympanometry showed that he did in fact have fluid in both ears. So going into the ABR, we knew that it would possibly show a loss, but the audiologist explained they have a way to account for that and if need be, to go around it.

Because the ABR results showed such a great amount of loss, they did what is called a Bone Conduction ABR. And here’s how I understood that test to work…. A vibrating device was placed behind Gideon’s ear. That piece vibrates the bones in the ear and by doing so it stimulates the cochlea, while bypassing the outer and middle ear (where the fluid is).

From my understanding, and the sympathy expressed by the doctors in the room, the BC ABR verified the results of the first ABR. Meaning that Gideon’s hearing has gotten worse.  🙁

So what’s next?

Well, we go back in 3 weeks to see if the fluid is gone. If not, the ENT wants to do tubes. In the meantime, they turned Gideon’s hearing aids WAY up and he seems to be loving them! He’s actually wearing them for hours at a time, which is unlike him.

Hopefully, at our next appointment we can discuss our options regarding a cochlear implant. If his right ear is as bad as the results show, Gideon should qualify (especially because of his diagnosis).

Until then, we appreciate your prayers that Gideon would not need tubes. We want a healthy boy especially going into the Summer. Gideon LOVES the pool and would be in the water every day if we let him.