Two steps back

Apparently Shannon is not a regular case when it comes to hearing loss. I took her to PCMC on Tuesday for another sedated ABR because our new audiologist as well as our new ENT felt the other ABR's weren't conclusive. Well it is a really good thing that they did the ABR, but the test did not start off well. They had 5 nurses holding Shannon down while they tried to put in her IV. I just sat in the corner with my hands clasped and was tearing up as I listened to her scream longer and harder than any other time. I looked over and saw quite a bit of blood on tissues then saw two of the girls switch places and someone else tried to place the IV. Once they were finished they had me hold Shannon to try and calm her down. She was pretty tuckered out and she just let me hold her. Shannon is not a cuddler so it was a nice moment to just rock her in the chair. She went under pretty quickly after that, only took about 5 minutes for the medicine to do it's job. A little over an hour later they finished the hearing test and began the process of waking her up. After she had woken up and had eaten we went up to meet with the audiologist and go over the results. She started off by telling me that the ABR results they had received today were significantly different than the results obtained by UVRMC. I just said, "in a good way, or a bad way?" She said that Shannon has a nerve problem somewhere in her brain. Her inner ear is not connecting with her brain so that she can hear the sound with this type of test. But that does not mean that she can't hear......weird. So the audiologist said she was going to speak with Shannon's ENT and tell him that she would recommend Shannon get an MRI to try and find where the problem is in her brain. So for now the only way Shannon's hearing can get tested is for Shannon to tell us what she can and can't hear. The audiologist was so confused by the fact that her ABR results were so different from each other. She was going to contact UVRMC to try and figure that out. So for now we are returning Shannon's current hearing aids and they are loaning us hearing aids until we know what Shannon needs. Since Shannon is 17 months old and can't speak or hear having her tell us what she can and can't hear is going to be quite the process. We have to do sound booth tests every 3 weeks for about 6 months and then compile those results to hopefully see a trend and then they can program her hearing aids. So many environmental factors come into play with sound booth tests. Is she responding to the lights or the sound? Is she responding to vibrations from the noise or the actual noise? Did she just by chance look the same way that the sound is coming? But then there is another problem, that only lets us know at what volume she can hear we still won't know if language is distinguishable for her because she can't tell us. If language still isn't distinguishable then she will need a cochlear implant. The FDA requires that a patient use hearing aids for 6 months before they will allow for a cochlear implant. So for regular people an ABR test is done, that tells them what can and can't, then hearing aids or cochlear implants are given and the people are good to go. Shannon is an anomaly. She meets with her ENT on August 29th and then the MRI will be scheduled. She has to be sedated for the MRI so they are going to also do another ABR test at that time since the results were so different just in case. Here are some pictures of Shannon riding in the wagon, trying to stay awake after coming out of being sedated. Starts with a yawn and then her giving up and falling back asleep.

Help, I need feedback

I would like to start my own online vinyl business but I am having a hard time coming up with a name. Here are some of the ideas, please leave a comment telling me what you like.

Design it in vinyl
Design it with vinyl

Display it in vinyl

Say it in vinyl
Say it with vinyl

Your Walls, Your Way (Steve's contribution)

Any more suggestions? This is tough.

Pushing My Cricut

I told my nephew a year ago that I would make him a Batman themed room, well I finally did it. Thanks to an old friend, Krystal Taylor, who let met borrow her Batman Cartridge.

Batman and Robin are each about 30 inches tall.

I used two different cityscapes to make the background. It is about 35 inches tall and about 11 feet long. 

I love how the brick turned out. I want to do something similar in Conner's room.

I did all of this with my Cricut Expression and three different cartridges. It isn't easy doing it with a Cricut, a lot of piecing. Hopefully one day I will have a big vinyl cutting machine. I have to use my Design Studio and Sure Cuts A Lot as well.

Here is Shannon's room....so far. It isn't finished. 

Besides cleaning up my vinyl mess I have quite a bit more that I want to do. Love my little model. Now you can see how big it is compared to a 3 year old.

I am adding more birds, a quote on the left side of the tree, her name over her bed and we'll see what else.

A few months ago I made these pillows for Shannon's room. I cut a whole bunch of petals out of fleece then sewed everything together and added some stuffing.

As soon as her room is complete I will post final pictures. Then I will move on to Conner's room.

Being a mom of a child with special needs

I just thought I would write down some of my feelings and experiences so that if someone else is dealing with a similar situation they will understand they are not alone. It is very difficult to explain and to get someone to understand how hard it can be to have a child with a disability. Shannon is almost 17 months old. She doesn't say any words and doesn't understand any words either. She doesn't know her name or know what the word mom or dad means. She can't walk or stand. She can't really communicate with me what she needs or wants. She is just fine with her quite world that she lives in. She tries to take out her hearing aids dozens and dozens of times a day. She now hides and tries to take them out. We have about 12 appointments every month with different specialists. She has a hearing specialist that we see 4 times a month, a developmental specialist that we see 2 times a month, a physical therapist that we see, 2 times a month, a speech therapist that we see once a month, an audiologist that we see sometimes weekly depending on if Shannon has ripped them apart or if they themselves are having issues. Then we have the occasional appointment with the ENT doctor and her pediatrician. If she wakes up at night she is so difficult to soothe. For most kids the mother's voice is comforting but for Shannon you just have to hold her. Luckily she is overall a VERY happy child. She'll sign a few words but still gets them confused. It is so different teaching a hearing child sign than teaching a deaf child sign. I need to tell myself more often that I am strong enough for this but that is really hard to believe. At night I lay her down in her bed and tell her, I love you, even though I know she can't hear it. Her hearing aids starting having major issues after two weeks of having them. Our new audiologist at Primary Children's told us to stop wearing them for a little while. She has scheduled Shannon for another sedated ABR on August 7th. Heavenly Father has blessed me with such a tender mercy during this time. For the first time out of 5 pregnancies I do not have gestational diabetes. It showed up in the beginning of this pregnancy at 5 weeks but around the time I turned 11 weeks it went away. I continue to test every now and then to make sure it hasn't come back but I am so grateful that I don't have to concentrate on everything that goes into my body. I still test Shannon every so often with her hearing. I turn toys on behind her or I'll say her name when her back is turned but she doesn't turn around. Conner, Steve and myself were coming out of the hallway tonight and Shannon was looking down at something in the family room so she didn't see us and couldn't hear us. Right as we passed her she jumped so big, we had scared her without even meaning to. She thought it was pretty funny and started to laugh. She is starting to understand some gestures which helps. I had wondered back in the end of November when I had that miscarriage what would be going on at this time since I was due June 24th, now I know why. I am hoping after the seventh of August we will get her hearing aids in order and programmed correctly so she can start learning to make organized sounds and eventually learn to speak.

Picture Time

With all the appointments and attention Shannon has been getting we decided to give Conner some one on one time and have a movie night. He didn't make it through the movie but it was nice having time with just him.

Shannon and dad making breakfast.

Conner wanted to exercise with his dad.

Conner is ready to learn, so I bought him a book that I make copies out of and these are his first letters that he did all by himself.

Shannon likes to flip the stool over and climb in, then she attempts to "fix" the stool.

Typical day.

Playing in the garage with dad.

Conner is teaching my mom how to play a skateboard game on my phone.

Steve and I went to Strawberry Reservoir and this is the only fish that we caught, but we still had fun/

This is our backyard. Here is Conner playing frisbee with his Grandpa Ferguson on Memorial Day.

Our little sweetheart, who is going to teach me more than I can imagine.

We had to get Conner all set up to ride his bike with training wheels.

Keeping up with Shannon

June 5th came and we were expecting to receive her hearing aids but there was a miscommunication. We called before the appointment to make sure they had arrived and the receptionist corrected the mistake and said we were just going for impressions. My mom watched Conner because I knew he would freak out at the audiologist because Shannon would be crying. We got to the appointment and as soon as the audiologist walked in Shannon started to cry and tried to crawl up on me and get away. She is so sick of people bothering her and her ears. He had to mix some putty together, then he placed it in a syringe, then, after he placed a tiny sponge looking thing in Shannon's ear with a string attached to it he shot the putty down into her ear canal. Oh, the screaming and clawing. I was having such a hard time holding Shannon down, she is so strong. The putty then had to sit down in her ear and harden. He left the room for a few minutes to find someone who could help us with the other ear. One of the secretaries came in with some bubbles to try and distract Shannon. By this point Shannon had calmed down but as soon as that audiologist came close to her she spun around and gave him this look like, don't you dare touch me. After some more screaming and pinning down we finally got both impressions. She will have pink aids and the mold that goes in her ear will be clear. It is crazy how many color choices and patterns there are for not only the aid but for the piece that goes down in the ear as well. For the first few years of her life she will have to get impressions every 6 months because of how fast kids grow. It will take 2 weeks to get her aids back. On June 6th we had an appointment up at Primary Children's with a different ENT doctor. I love Primary Children's such an awesome place. Their waiting room is filled with so many toys, they even have tv's set up with video games. This was the first time we had seen this ENT so after a quick recap of Shannon's history and a look at her hearing test results he decided that there wasn't enough information received on the tests. He had us do another test while we were up there, but this one was completely different than the others. We sat in a sound booth and they played different sounds at different pitches and watched her response. The ENT doctor said he agreed Shannon needs hearing aids but he wants to do additional testing to figure out the source of the hearing loss. He said there are two different types of hearing loss, one is conductive and the other is sensorineural. Conductive hearing loss can eventually be fixed with surgery, but sensorineural has to do with nerve damage and is permanent. We will be headed back to that ENT in 3 months were he will check Shannon over and then he wants to do an MRI and another sedated ABR. He was great and it was a very good visit. Next week Shannon only has two appointments, one with the physical therapist and the other with Kids on the Move.

Verdict on Shannon

Last Thursday Shannon went in for her surgery to get tubes in both ears. She had a very hard time coming out of anesthesia, she was very upset and I could barely hold onto her. Steve felt bad because he has missed all of her appointments as well as the surgery because of work. I've been so grateful for my family especially my Grandma and her willingness to watch Conner while I've been taking Shannon to all the different appointments. The tubes worked very well and drained all the fluid out of her middle ear. Yesterday, which was Tuesday, she had her sedated ABR test to finally give us a definitive answer on her hearing. Once Shannon was put under, the test lasted about an hour and 45 minutes. When the audiologist was finished he said the results weren't as good as he was hoping. The higher the pitch the more severe her hearing loss, she still can't hear quite a bit of speech and the speech sounds she can hear are muted. He said she would need hearing aids in both ears, the hearing loss is because of a nerve problem. On Tuesday, June 5th, she will be fitted for her hearing aids. She will then meet with a team of specialists to get her caught up on development. An occupational therapist will come in after she gets her hearing aids to help her learn how to balance so she can stand alone and walk. A speech therapist is coming from the School for the Deaf and Blind to help her learn how to talk. I am not sure how often they are coming yet. I just have to remind myself this will be a long process and I have to try and prepare myself for this journey that we are all beginning. They have already cautioned me that it will be very frustrating but I will have to put Shannon's hearing aids in hundreds of times a day because she will take them out. That'll be fine as long as she doesn't put them in the toilet. I am excited for her to hear but I am a little nervous for her. I hope that being able to hear and having everything louder doesn't scare her. I am very grateful that she can now start to develop and learn even more, it really is going to be fun to watch her grow. Heavenly Father matched Conner and Shannon perfectly. He already is and will continue to be her protector as she goes through this trial and as she enters school, so grateful for families.

Shannon and her hearing

So, when Shannon was born she failed her newborn screening the day after she was born. No biggie, they were going to try again the next day. Then she failed it for the second time and we were told to come back three weeks later to try again. So when Shannon was three weeks old she had her third hearing test and she failed again. We were then sent to an audiologist in Salt Lake to do a more extensive hearing test. Once there we found out she had a 10% hearing loss. Doesn't sound like that much of a loss but we listened to an audio file of what things sound like for Shannon and I was surprised for just a 10% loss how much the hearing was decreased. We then went back two more times for the same test over the next couple of months. By the time she was four months old her hearing was just outside of normal and the audiologist told us she would give her a pass but watch her milestones. After watching Shannon for the last year I decided that there was something wrong. I made a few calls and she was evaluated by Kids on Move and she is developmentally delayed in almost every area. She doesn't answer to her name, she can't say any words, she can't walk or stand alone. They told me it would be a good idea to have her hearing tested again. I called UVRMC and they scheduled a sedated ABR for the 18th of May. Last Friday, the 18th, the procedure didn't start until one o'clock in the afternoon which was hard because Shannon couldn't eat all day. They gave her a couple different meds up her nose to prepare her to receive an IV. They tried to get the IV in and blew a vein so then they tried the other hand. She then started to get the medicine to put her to sleep. Man, she fought going to sleep, the nurse had to hold her down. An hour and a half into the test I asked the doctor how everything was looking. He said it's not a mild hearing loss, it's a severe hearing loss. I started to get teary eyed. He said he was going to try a couple other tests. He then measured her hearing through her bone instead of through her ears and found she could hear a little better. After another test he found out that she had so much fluid in her middle ear that her eardrums weren't moving at all. Weird, since she has never had an ear infection. He said she would need tubes put in, then they would have to do this sedated ABR all over again, and if she is still just outside of normal would need hearing aids. As of right now it is as if Shannon has ear muffs on, onto of another set of ear muffs. The doctor said she can't hear a regular conversation, just muffled sounds, speech isn't audible. 

Shannon during her test.

 Today we went to the ENT doctor, Heidi Heras, she scheduled Shannon's surgery for this Thursday. I then scheduled her ABR test for next Tuesday the 29th, so within a week and a half Shannon will be put under three times. Poor thing. I am so excited that Shannon will finally hear her name and will hopefully get her balance so she can walk, she wants to walk. So grateful for modern technology!

Wow, it's been awhile

Well let me do a quick recap of the last few months.
We moved the weekend of General Conference to South Orem. It's a great place that fits us really well. It is actually my Grandma's house, she lives in the basement. We have the upstairs and part of the basement. It is a 3 bedroom house and it is fully fenced, it also has a swing set in the backyard.
 Ok, here we go.....starting in January. Shannon got her ears pierced. She did really well, she was more afraid of the other Wal-Mart worker who was just watching. She has some major stranger anxiety sometimes. She still has no interest in walking, she loves to crawl around and is such a happy girl.

Decided to do some activities with Conner that I learned off of pinterest. We used the blow dryer at first but it was taking forever so I used my embossing gun instead. Only took a minute.

Made our own puffy paint.

I decorated a shirt for Shannon. It turned out pretty cute. I bought this plain shirt from Wal-Mart, and some ribbon from Hobby Lobby.

Pinned them down and sewed, then I added a purple ribbon across the top to tie in the back.

In February I chopped my hair on a compulsive whim. Still regretting it everyday.....I cut off 12 inches.

Shannon's birthday is February 28th, Conner's is March 7th so we had a double fish party. It is suppose to look like you are under the water.

Jellyfish made out of paper bowls and ribbon.

Their fish cake that I attempted.

Everyone singing happy birthday. Conner really didn't like the attention.

We had a pinata out back. The bat only lasted through about 6 kids, then it broke. The kids then used a rubber mallet to break it open.

They were both so spoiled! Steve and I were blown away at everyone's generosity.

We had no idea how much Shannon loves dolls. My sister Debbie gave this to her and Shannon loves to hold her and rock her.

Shannon and Conner just playing.

This is in our new house. Conner had a little box of chocolate milk and Shannon really wanted some, so he decided he would share with her. They didn't even spill.

Tonight Steve and the kids were throwing that bear up at the fan trying to get it stuck. They all thought it was pretty fun.

Success.