Wednesday, September 23, 2015

Special Ears Part Two

Today marks one week since we found out our little twinnies need hearing aids.  I'm happy to say lots of progress has been made in getting their hearing aids and appropiate therapy to help them talk. I'm going to be brutally honest though with typing up this post.  Maybe it will help someone else. One thing I discovered in this journey to new ears is that it's an expensive indevor. There were a murad of emotions this last week but all of that was clouded by the cost factor.  I've also discovered that either insurance doesn't cover it at all or they pay very little. Unfortunately living in Texas didn't let us use TEFRA because it isn't available. All we have is TEDHI which is our states resource to help facility's record when children do have hearing loss OR identify risks so children can be tested sooner or monitored for hearing loss. Through TEDHI I discovered that our twins had some risks the hospital never informed us of. If we had known we would have had them tested sooner and they could have had the aids this whole time.  The good news is the director of TEDHI was able to contact our delivering hospital and give them proper information so maybe another family can have their child tested sooner and know that risks that are possible. I have to give a huge thanks to Doug Dittfurth because he was caring and very imformative  TEDHI also made a suggestion to call ECI and the school district. We have been working with ECI since the beginning of August and they have made contact with the school districts audiology department to get additional audiology help. After discovering all that information we needed to start the process of getting the aids. Thankfully our insurance covers a little but do you have any idea what ONE hearing aid cost (and this is for one without a ton of bells and whistles)? It's $1500 an EAR and in our case times FOUR! Friends that is $6000. We were so shocked!!! I share this so if you are reading this and your child needs an aid you aren't shell shocked when the doctors office tells you this. To top it all off our Audiologist doesn't file with insurance. We discussed going with an in network audiologist but we trust this team because they put in my MIL's cochlear implant and they work with top products. My MIL bought an aid one time from another facility that gave her fits. She moved to this facility and they couldn't even find the aid she was sold. It was a $7000 piece of junk! In this case it's so critical for the twins to talk and not have any further delays. So we decided you get what you pay for sometimes so we are staying and will file ourselves. Thankfully we were able to order their aids and they should be ready by their October post opt visit. Their aids will be by Phonak and are the sky Q. We were able to order them in colors (to identify easily with twins) as well as the ear insert mold will be specific colors. I'm just ready for all the logistics to be done so we can focus on the true matter at heart... My twins being able to hear clearly and hear our voices. 

This last week we tried to find the silver linings and focus on those...
They CAN hear it's just muffled 
They are here and we get to love on them every moment of every day.. I read a Facebook wall with a mother who delivered a still born baby and that puts everything into prospective. 
We have the resources to help them hear and learn
We have an amazing God who will take care of our needs as long as we have faith 

Well that is an update. If you have time say a little prayer as Brennen has thumb surgery on Oct 2nd. 

Here are their aids. 

Friday, September 18, 2015

Special Ears

I know I haven't posted the party pictures yet. I simply haven't had a chance. I will though soon!!

It's a Friday night and oh how I've looked forward to a down evening with no homework, next day preparations or rushing. This week was a doozy and kind of rocked our world. Wednesday the world kind of stopped for a bit and since then has been a whirl wind of emotions, googling, phone calls, stress, and if I'm honest a few tears. I need to back up to go forward. So back in May at the twins well visit their speech was a hot topic. Having two others in past speech we tried to apply everything we learned with the twins. Still they just babbled and no "simple" words like mama or dada. We noticed they didn't flinch with loud sounds or even turn their heads when you called them. When you talked to them they really liked making eye contact and would follow your motions with their eyes with slight hesitancy. Looking back I realize so much. We just knew they were on the cusp of talking. My pediatrian said, "Kriss if they aren't talking in a month you need to call ECI." Knowing how ECI works and taking some advice from a friend (whose son is in ECI and speech too) she encouraged us not to wait. That's advice I'm now so greatful for. We set up an evaluation but it was a month wait. While we waited I was able to schedule a hearing test in Dallas which the specialist who put in my mil's cochlear. I knew they prob wouldn't handle a hearing booth but we had to try that first. Sure enough the specialist recommended we do a sedated hearing test (ABR). She didn't see any fluid in their ears during the visit and their tempanagram was fine (ear drum was functioning as normal). So we scheduled the hearing test and it was Wednesday. The procedure is two hours long with a two hour recovery. They took Barrett back first and when he came out we learned he had high pitch nerve damage hearing loss. I was not expecting that and it was heart breaking to learn your child has a hearing problem. He will need hearing aids. Then they took Brennen back and after two hours the specialist comes in to check on Barrett and then starts saying "they" this and "they" that. I said, "They both have it don't they?" She said, "Yes they both have the exact same thing and the frequencies are almost exact." I said, "Wow they take being identical seriously." So Brennen will need hearing aids too, on one hand I'm happy they will be able to go through this together and on the other hand I'm so sad they have to endure hearing loss at all. While they were under anesthesia they took molds of their ears and prob sometime around October 12th they will be fitted for the aids. Once I had a few hours to digest this news I felt better knowing they weren't deaf (their paternal great great grandparents were deaf) and they can hear it's just very muffled like being underwater. I can't wait for them to be able to hear our true voices in a few weeks. Hearing aids sound simple enough until you find out the cost. Then the stress sets in because they average $1500-3000 PER EAR! So that's roughly $6,000-12,000. Thankfully our insurance will pay 85% up to a $1500 max but the office doesn't file the claims. You have to pay upfront and submit for reimbursement. Fun fun! So we have three weeks to figure out how this is all going to financially play out. I know though that the lord will provide but talk about stressful!! 
I was able to call our ECI person and get a referral for the school district to get their audiology team to work with them as well. I also spoke with TEDHI and they are getting us some resources. I won't lie this is so overwhelming. Yet at the same time there is so much to be thankful for!! Now I just need a money tree!! :)

Brennen and Barrett with their granny. She help keep them calm while I filled out paperwork & talked to doctors/nurses. 

Brennen waiting him turn! It's hard to keep a two year old entertained for two hours in a small curtained room! 

Sorry about the hand but I love this picture. He was coming out of anesthesia and was comfy so I didn't mess with him. Live his little face here (Barrett). 

Thursday, September 3, 2015

Major catchup

Summer flew!! We were so incredibly busy that we blinked and summer was over! I'll try to bullet point some things to catch up:

~ Britney and Brady took a karate homeschool summer class and loved it!! Britney gets to continue this fall and spring. I feel bad because Brady had to go back to school and won't be continuing until next summer. He is finishing his last elementary year and will transition into homeschool next year. Ben tried to do karate but there was just to much for him to handle sensory wise and he opted to not do it after he went to the first class. Brit also did a social art class with 10 other girls for 8 weeks. 

~ this summer we also tackled a very hard emotional diagnosis. We finally have it confirmed Ben has high functioning autism. On one hand it makes us sad but on the other we have always known he was on the spectrum somewhere so it's a relief to know. Now we can make sure he has services at school/privately to help him be his best. He is the most amazing child and he has probably taught me more than I've taught him. 

~ I spent some of the summer planning my inlaws 50th wedding anniversary! They didn't want anything to big do we opted to host a luncheon with their best friends. It was so fun to plan! I'll put up pictures of that in a seperate post. 

~ I also spent the summer planning Brit's seventh grade homeschool year, attending some homeschooled leadership meetings, and a workshop. 

~ Riley and I took the older kids to Great Wolf Lodge for a mini vacation. The twins stayed with granny and papa so we could focus on the older kids. We had so much fun!! 

~ Brady and Ben started school. Brady is in fifth and Ben is in second! Britney started seventh at home. 

~ The twins started speech. They aren't talking and have to go for a sedated hearing test next Friday. I took them to a hearing specialist in Dallas that put in my mil's cochlear implant. Since she has an implant and their great great paternal grandparents were both deaf we decided it was worth making sure they can hear fully. We tried the booth but they were just to little to coorporate. Barrett does not turn his head when you call his name or respond to loud noise or any noises really so I'm worried. 

~ Brennen saw an orthopedic hand surgeon and will have surgery in Oct. He developed a trigger thumb right before his 2nd birthday and it did not fix itself. I'm so sad he will have to be put under again for this. 

~ homeschool is going amazing! She is doing math, grammar, reading, Latin into to Spanish, art history, choir at a fine arts academy, karate & typing. We start at 8 and finish core subjects around 11. She gets a big break plus lunch and then works 1-3 except for Monday's since choir doesn't get out until 2:30. We don't homeschool on Fridays. I think she has learned more in the two weeks we've been schooling than all last year and the biggest thing.... She is smiling and happy! Which means I'm smiling and happy!!! 

Now for some pictures!  

Saturday, August 29, 2015

Happy Adoption Day

Ten years ago Riley and I stood before a judge and promised to give two precious children our last name, our heart, and every ounce of unconditional love we could pour out. After seven long years of infertility we could not believe we had two children that were ours!! Then three years later on the very same date we got to make the same promise again to Ben. We feel so blessed and honored to have been chosen to be their parents. We are thankful! So today we celebrate being a Forever Family! I can not wait until Brennen and Barrett are old enough to understand how awesome this day is! Riley got them donuts (kids request) for breakfast and later we went out to lunch. They also spent their summer money at Toys R Us. Lord thank you for all your many blessings and the many people you placed in our path to lead us to the kids. It's really neat to look back and see how everything fell into place!

Saturday, June 20, 2015

Summer Time

It's early here and everyone is still asleep. I decided to steal some time to update this old blog and drink my coffee. We are in the mist of summer around here. Kids are home, Riley's work schedule changed from 6:30-3:30 (love love love), swimming, karate, art class, library time and just plain crazy relaxing. So much to tell.... So I'll back up a little. :)

My twin-a-roos turned the big TWO in May. I don't even know how this is possible but it is. I love them from the top of their golden heads to the bottom of their adorable little toes. It amazes me how they can be so alike but so VERY different. Brennen has a constant smile and is the life of the party. He prob puts miles and miles a day on my floors racing all over. He never messes with anything but he knows this house inside and out. He is also my blanket boy. Always has to know where it is and love on it. He isn't much for toys. He loves chew toys and rattles but he is way to busy for toys right now. His favorite show is Tek the Tracker on BabyFirst TV as well as he likes Harry the Bunny. For some reason this adorable show with three mice scare him crazy. We are talking full on screaming, panic and tears. As soon as that comes on we turn it real fast so he doesn't get so upset. The guide doesn't tell us when it comes on so it's hard to judge it sometimes. At his last well visit he weighed 24lbs 11oz and was 35" tall. We FINALLY made it to the 10th percentile and kicked the 5th percentile to the curb. That was a hard feat because they are very picky eaters and would rather just throw stuff overboard than actually try it. I have to add either butter/olive oil/avocado to just about everything or give them really high fat Greek God Yogurt because they are so active they need all the fat I can get into them. A week before his well visit he had woken up at 4am for some mama snuggles and while sitting on the couch I was watching him with his blanket. He has this certain way he "hooks" the silk around it. Then as I peered closer I realized the reason why is he has a locked thumb. I instantly googled Trigger Thumb and felt bad because as many times as I've caressed those tiny hands this was the first time I had noticed. I messaged Granny later that morning and she came over to see for herself and also felt bad because she to never noticed. At his well visit our pedi suggested we take him to a pediatric orthopedic hand surgeon to have it looked it. I made the appt with her but we can't get in until Sept 2nd. It isn't painful to him so I was ok waiting but I never realized that there were so few pediatric hand surgeons. We will go see what she has to say and if we need to we can go to Dallas for a second opinion although I would prefer to stay local and I have always been happy with Cooks. The other thing is they aren't talking. They babble a lot but I have tried everything I learned with Brady and Ben on speech. Including giving them chewy tubes to strengthen their jaws, brushing the insides of their cheeks lightly to stimulate/strengthen their tongue (if you brush one side the tongue moves to that side and it's like exercise and using bubbles to get them to sign/talk. No nada, nothing. They just smile and giggle. So after talking to our pedi I made a referral to ECI to get an evaluation to see if they need some extra help. I really think being a preemie is most of it but our pedi says that stops at two, although on many levels because I am around them all day I beg to differ. They have always done things on their own time table. Now for Barrett Buglet. Barrett would be content all day if he could just lounge in your lap. He LOVES to be held and is very mello. He has got the best grin and giggle when he is tickled. He LOVES Brady and I often overhear Brady say, "How is my Bear Cub?" Just melt me! Now Bear loves toys! He will play and figure things out. He loves to open drawers and cabinets. He never pulls anything out, he just opens them, closes it and leaves. I don't have anything down low that could hurt him and I only use Shaklee Non-Toxic cleaners. Barrett is NOT a blanket boy. He likes them in his bed when its time to sleep and that's it. He doesn't need to carry one around the house because he would rather play with his toys. He was 24lbs 9oz and 35 1/2" at his well visit. They are neck and neck with each other. Thankfully he doesn't have a trigger thumb. ECI will evaluate him too because him and Brennen are exactly alike on the speech issue. I am a little down about this because we have just tried so hard and I didn't want to go through another speak adventure..... 5+ years with Ben and while we aren't doing private anymore he is still getting school services. More on Ben in a minute. For the twins birthday we decided to keep things simple simple this year. Riley took off the day and while all the kids were in school we had our own little celebration with them. We had planned to go the Botanical Gardens to let them run and play but unfortunately the rain foiled our plans. So we went to Blue Mesa Grill and had some lunch, picked up a cake at the bundt place, and stopped at the Dollar Tree for some birthday decorations. Riley took me to Kendra Scott and I picked out some Blue Lace Agate earrings to mark their 2nd birthday!! Then later that night we had dinner and cake/icecream with all the kids and Riley's parents. We gave the twins the cutest fisher price learning chairs. Barrett is in love and Brennen is like SIT? I'm to busy for that! lol

An update on Ben: I can't remember how much I shared in the past on Ben but he truly is my special boy. Him and I have walked many roads together to overcome being exposed to Risperadol in utero. We have always known that he was on the spectrum but we had no idea where. We hated to have him formally diagnosed with anything at such a young age so we just always kept that in mind that he was on the spectrum. We also did countless hours of OT, PT and Speech to help him be successful. This year we hit a rough patch because school has such higher standards for lower grades. He would just physically shut down and refuse to do work. So after much discussion with his teacher we requested many formal testings through the school while we waited for a private child physiologist to become available. It was a long school year waiting but we FINALLY have our testing appointment on June 29th and this means we will be able to get him more help at school. The school physiologist and our private doctor both think he has high functioning autism. On one hand I am sad for him and on another I am so happy we finally have an answer to help and understand him better. He is the most amazing beautiful child and I can't imagine not having my Benny. He has taught me so many things and because of him I have developed patience/empathy like you can't believe. Such a relief really to be at this crossroads. He is loving summer! This is the first summer he is really into reading too and my reading reward system helps. They earn money for every 20, 30, 40, 50, 60 minutes read and they make sure I sign their log afterwards. I have a big sign up that we keep their running totals to see who is going to win first prize (that person gets an extra $5.00). We use their tablet timers for accountability. At the end of the summer they get to go spend their unspent gift cards, granny money, chore money and reading money. They love end of summer toy shopping!

Brady's turn: Never in my life have a met a more tender hearted giving sweet child. He loves and tries to mother everyone in this house. He worries when Ben is upset over something. He worries if the babies are sleeping longer than normal. He soothes others if they are hurt or can't find something. He tells me all the time how much he loves me and his dad. He always says, "Mom I love our babies so much." His actions speak far volumes above his words though. He can be reading and a baby will be right there with him. This school year was a rough one for him too because the amount of work was insane! We can thank the stupid STAAR testing and them testing two grades above grade level. Our kids would learn so much more if they weren't teaching to a test. Ya, can you tell I don't like this test. I have written so many letters our representatives about this and I was thrilled that Pearson was let go! Lots of changes for school coming ahead for the Stewart household (more on that in Brit's update). Brady is entering the fifth grade and this is his last year in Elementary. I am so sad about this because that means my son is growing up. We have to do open enrollment at their current school so I am happy he will finish in one place. He won't be going into a school district though for 6th grade and one hand I'm petrified and on the other relieved that he can learn at his own pace and not to a TEK standard. Brady is LOVING Karate. I found place nearby that is for homeschoolers and all the kids can take it together for a very reasonable price. Well, all the kids were in it but Ben decided he couldn't do it. Too much touching and it stressed him out. So he stays with his granny/babies during their karate lessons.

Now my only daughters turn, Miss Brit......  I need to back up a little. When we did open enrollment for her to the feeder school we knew there was a GREAT chance they would have no room for her. So that meant after much looking and decision making that she would need to go to our district middle school if she didn't get accepted. She didn't get accepted so we had enrolled her in our middle school. There were good and bad things about this school. The good was it was across the street from our house and it was easy for me to get to her with babies and such. That was the ONLY good thing about this school.We had so many problems. It took them two plus months to get her education plan in place and only finally did when we told them get it going or we're calling our attorney because LEGALLY have to give her this. They had to erase all her test and quiz grades for two months because they weren't given to her by the parameters her dad and I set up for her with the diagnostician. Things were finally moving along and sometime after Christmas we hit another snag. Just a little back information. Britney has static encephalopathy which in a nut shell is an unspecified brain injury. She was diagnosed with this around the age of 6. It is from all the abuse she sustained as a baby from her birth family.  Which means that even though she is 13 sometimes she isn't and she still has a bunch of catching up to to. To give you an example, when she was 6/7 her doctor told us that she was only coming in at a medium age of 3 yrs 8 months old and that it would take years for her to catch up to her actual age. She also has a hard time advocating for herself and is very literal. She also has a hard time with long term memory. So if you were to ask her if she had a good Christmas she would smile and say yes but if you asked her to give you details she can't. She also has a hard time with size perception. We have a big fridge and a bigger dorm type fridge for extra milk or cold drinks. If I said, "Hey go put this in the little fridge" she would stand between the two fridges trying to figure out which one is which. So now I tell her to go put it in the black or white fridge. Unfortunately, the kids at school took of advantage of this and bullied her to no end. We noticed a few things but then I got a call in April that changed everything. I'm not going to give major specifics but I will say that those little punks were not classy kids in the least little bit. They talked to my daughter with the filthiest of language and torturing her with sex questions. When she came home and told me everything that was said to her you just have no idea how angry we were. I'm so thankful her and I are so close for her to tell me these things. Besides the language and nastiness (for example asking her if she wants to be raped or how many ***** does she think she wants at one time) they talked in Spanish to her as she changed and used the word "peto" many times. You can look up peto, it's not nice. She was having a really hard time so we talked to the school counselor and got her enrolled in art therapy to work through everything that was said Plus this summer she is doing an all girl art enrichment activity for 8 weeks. She had such a hard time because she is used to being liked by everyone but being called "white girl" and all the other things took a toll. The last straw was when she came home and told us that a friend of hers said that a group of kids planned to beat her up after school the last day as she walked to our car. I don't know if that would have happened but after the year we have had why chance it. We tried to make lemonade out of lemons but we were done! Thankfully there were only two days of school left and we withdrew her immediately! We joined the Texas Homeschool Colliation Association to cover us legally and sent certified letters to the school. I still haven't figured out all the specifics but I am now a homeschooling mom to a 7th grader. I joined a homeschool local group and went to their yearly planning meeting for the entire fall/spring semesters. We have field trips planned to museums, theaters both in Dallas and Fort Worth, aquariums, book clubs, and holiday parties. I also enrolled her in a private fine arts academy for choir because I didn't want her to have to give up the one part of school she loves. She should continue with Karate in the fall after this summer course as well. Riley and I are attending a Home School workshop in July too. The plan right now is to learn doing this with Brit this coming year and then Brady can slide into homeschool too because my sweet blond tender boy is NOT going to that middle school. He will be an instant target and we are not going through this heartache again. She is excited about being at home and I am too. I think it will give us lots of time together and she will still have social interaction with other kids. I won't lie I'm terrified but the great thing is I think she will learn more this way without all the fluff. Also, here therapist thinks its a great idea for her. We are also waiting for an appointment with a neuro phychologist to get some further testing on her now that she is older so that we can know the full extent of her brain injuries so we can help her even more. Just a little bit about her, she is loving karate and is a girly girl who loves makeup, jewelry and clothes! She is so excited that she no longer has to wear uniforms!

So as you can tell this is why my absence from writing and updating has been great! My life is so busy trying to make sure all the kids needs are met and shuffling them from appt to appt. Despite all the craziness life is so good and we are all so happy. We have some fun things planned with the kids coming up. Monday is Riley's birthday so of course there is a small party. Then we have a trip planned to the Dallas Aquarium and a trip to Great Wolf Lodge! We decided to do local trips because with small toddlers it's a little difficult.

Here's some pictures:

Full house, full arms, full happy heart! -Kriss :)

Monday, March 9, 2015


Seventeen years ago I married the person I know God created just for me. There are so many ways to describe how I love him. He is the calm to my type A personality. He is my own personal comedian. He is my comfort and person I love to spend all my time with. I think sometimes he knows me better than I know myself. When I think about the last 17 yrs I think about all the different roads we have walked together, adoption and the birth of our twins being the two biggest. These two events brought us even closer. To stand there with him when a judge granted our petition to adopt or to have him by my head when our babies were born made me love him more than I can put into words. Sometimes I'll be thinking something and he will say it outloud. It's a joke for me to say, "Get out of my head!" when he does that. I feel so blessed to call him mine!! 

We had a full date day planned!! Riley was so excited because he had made us plans to go to a four hour cooking class. Then it got cancelled and he was so disappointed!! I was too! We decided to just spend the day hanging out until our dinner reservations. We love overnight trips but we felt that leaving the grandparents with all five kids might be a little overwhelming for them right now. Plus we never sleep well other places and our bed is pretty hard to beat! We started the day at a place called Brewed. It was so cute and very urban chic! We decided to each get a plate and share it. We had bacon, eggs, biscuits, jalapeƱo grits, and chicken n waffles with maple thyme syrup. We also had there pot of pressed coffee with fresh cream. It was amazing!! I loved he decor! 

After breakfast we ran some errands. Riley ran in someplace for a few minutes and I stayed in the car. I entertained myself taking selfies lol

There was a Carters in the vicinity and Riley said we should go look at some summer clothes for the twins. Twist my arm!! He knew I had just sold their last summers wardrobe and needed some things before the heat hits. 

My one request for the day was to grab icecream. I have been counting calories, working out and eating a really lean diet. I hadn't had any icecream in three months. He said, "Ok but first I want us to run into another store so I can show you something. I had no idea where or what we were doing! He drove up to Busy Body's. It still didn't click. Then he said, "I picked out a new elliptical but I want to make sure you like it." I think I squealed!!

Our old elliptical has 13 yrs of miles on it and it squeaks so terrible that it drives me bonkers. We've tried to oil it a few times and it still doesn't work. I was so happy!! I loved it and it will be here in two weeks!! Talk about a wonderful surprise! I actually sold our old one today to the most adorable older lady. I told her it squeaked and she told me that once she took her hearing aids out she wouldn't hear it anyway. Lol!!! After we left the store for exercise equipment we headed straight for yogurt land!! It was our lunch so we had room for dinner! 

After icecream we walked around downtown, enjoyed the shops and each other's company until dinner time. We ate at Texas de Brazil for dinner! It's our favorite place! Although I had to pace myself because I can't eat like I used too and I didn't want to leave miserable. It was all so good!!!! Afterwards we headed home to put our kids to bed and watch recorded family feud episodes lol! We love that show!! Happy 17 years with my best friend and love!!