Tidbits from our family in our everyday "normal" life. Some people blog about specific diagnosis of their kids but we have three individual kids. Each kid has their own Title as you would have it that the doctors gave them, and they are also all adopted so I add bits about it but mostly concentrate on who they are....OUR KIDDOS!!!
We finally made it to Milwaukee for Aaliyah s surgery to treat her Moyamoya. It's been quite the challenge just to get here and now I'm a bundle of nerves. Miss Aaliyah has been ok with the idea of it up to this point though I'm not sure she understood all what it entailed other than she would have part of her head shaved and have some head aches when it was over. She was not ok with going to school before her hair grows back but I assured her we would find fun hats to wear.
Now that were here...it ended up scheduling kind of goofed so the surgery ended up the day before school started. I had to go with her by myself. Dan is at home with the other two getting them started at school for a new school year this fall.
The trip here was crazy..interstate all the way should be easy...Not. lots of Orange barrels. Some area closer to Madison and Milwaukee actually come to complete stops in the middle of the interstate. I drove on Sunday thinking traffic would be less but it seemed like lots of people out there doing their Sunday drive....bumper to bumper to be exact lol.
Aaliyah had surgery on Tuesday... it took four hours. It's a long time to wait all by myself but thank you Facebook friends for keeping sending prayers. Thankfully a sweet volunteer took me under her wings when I broke down in tears. Long long day. Finally almost 4:30 before I could see my baby. It went well the doctor said. Tough little girl!!
Took most the evening to get headaches and throwing up under control but by 1am she was good.by 4am woke up watching cartoons.
Wednesday morning took awhile to get headaches under control but finally they seemed to be doing well. By 10 pm was a chatty Kathy.
Today (Thursday ..right?) She woke up at 5:30 with a bad headache..oral med either didn't control head or caused tummy upset as threw up at 6:30. Head each then got worse. She had moments today of being good but headaches not very good under control. Neuro checks are all good. She did sit on the edge of the bed for a short period with OT but shortly after bad headache started again. IV pain med and call to the Dr. If fluids were turned down but increased again because just not eating or drinking much of anything. Hoping this bump quickly smoothes out. Peanut is resting at the moment.
We finally made it to Wisconsin! This was supposed to be in April but insurance needed to be approved. Aaliyahs Neurologist read her MRI/MRA in February that had been done in October as a follow up from the year prior when she got a new diagnosis of Moyamoya disease. We were told this was an urgent appointment but the insurance is slow to get approvals done. We got there that's what counts!
She had an angiogram on Tuesday which was a very longgggggg day! I was told the procedure would be an hour and she would lay still for two hours...so I figured 4-5 hours to wait. Dan didn't want to drive back to the motel if he didn't have to as he feared he would lost in Milwaukee so he was armed with NeVaehs iPad a couple DVD players and a charger and 6 pullups for her and her stroller in case she needed to go for a walk or needed to wind down. For Andres noon, 2pm & 6pm meds and both iPods.
Well after we checked in I was informed it would be 4 hours not 2 afterwards....oh boy! Dan said kids are good play it by ear. Well....after the four hours...little miss was throwing up and we ended up staying an extra 3 hours. She suddenly said give me my clothes and let's go! Dan said the kids were great! The little play room provided a nice place for Andres and get this...He said "I had a blast" lol. We were there from 6:30-6:30. IPad & iPods went dead, movie players were dead so Dan would charge one for about half an hour and give it to NeVaeh to watch, ran out of pullups about 3:30 so poor kid was soaked. But they were all happy!
The next Day we say Dr Lew a neurosurgeon who read the angiogram. He told us her right side of her brain did have a total blockage years ago that collateral circulation has compensated for and she has good blood flow to the right side of her brain.
The left side of her brain has very poor blood flow. He said the blood eventually gets there with the little collateral arteries but it's very slow. He recommends a surgery L Pial Synangiosis. They will take an artery from on top of her skull and place it under her skull on top of her brain it is supposed to encourage more artery growth and improve blood flow. This will be a week in the ICU as the surgery itself increases the risk of stroke. However without it she is at risk of stroke :( .
She also saw Dermatologist Dr Seigel. Her hemageomas are still active which was revealed with her angiogram. Usually they become inactive at age 2 but Aaliyah will be 7 in September. Because of her Moyamoya diagnosis she is not a candidate for any medication for the hemageomas so we will let them run its course. She did say maybe a couple more laser treatments might help lighten it up yet. (She's already had 5). Interestingly Dr Seigel saw her in Oregon and diagnosed her with PHACE Syndrome as an infant ...What a small world!!
When ever insurance approves this we will again be going back. We will also have two more follow ups after that. So I may have to buck up and get over my fear of flying...8 hours is a long time to drive. Travel may prove to be quite an expense.
Irony of this all...I bought newer car so we wouldn't break down...my car overheated right when we made it to the motel. We made it to all the appointments ok but afterwards it overheated again. Lol...I think this is God's way of keeping our mind on something else.it never broke down just kept concentrating on the heat gauge. Not sure why a fan motor on a three year old car should go out but such is life lol.
With NeVaeh a month ago she had her sedated ABR. She did well with her sedation for this but her waking up she is a fighter till the medications finally wear off....She is very strong! The results were good and bad news. Good news her hearing in her right ear is fairly good. She can hear up to 30 decibels. Bad is she can not hear anything in her left. The audiologist said there is a device that could help called a BAHA. It would consist of an implanted thing behind her ear that the actual
device attaches to. Im not sure if we will go there or not. They said they could trial it with a head band first.
Adventures of children with special needs are never dull or lacking of stress to say the least!
Jesus died on the cross and he has risen for our sins to be forgiven!
Well these past 10 years Easter has even been more to our family.
Dad Passed away ten years ago the day before Easter.
This was going to be a very rough holiday for mother but since she passed in January in return it proved a bit challenging for the rest of us.
The Tenth anniversary of Dads death and first Holiday without mother.
I insisted on a family gathering. It did seem a little awkward without mom there as the gatherings always were for her it seemed but it went well.
Kids added sweetness to it.
The Easter Party was Complete when little one year old Trinity came with her t-shirt on announcing she was going to be a "Big Sister"! Congratulations David and Laura!
Yep that's right double digits. Shes a big girl! She towers over the other two but she's still a baby at heart.
I wish the world for all our kids. We hope one day to hear her beautiful voice but right now we hear occasional words though she has no problems getting her needs known.
NeVaeh is a pro at using her iPad with the Talk Tablet App to communicate. We had a small party for her with just us as she isn't always fond of "big" gatherings.
She fared great! We got her a new Ipad as her old one was wearing out, a new swim suit and a new sweet pea mp3 player. The other kids got her some new toys.
Can not believe how our little baby is growing up!!
Its been a little while since my last post. Well since our whole world sort of did a little flip. It sort of gives a person perspective the true meaning that things can change in the matter of a moment.
Well on January 23rd my mother who had been doing fine didn't answer her phone. Since I was ill with strep throat my husband ran over there and met my brother......
Things were not ok. She was not ok.
Seems she had passed away sometime either going to bed or getting up in the morning sitting by her bed. She looked peaceful so it must have been quick what ever it was as she hadn't even tried to reach for her phone or anything. It has sent our family in a shock as she never really was ill that we noticed but also a comfort that she never had a long suffering like our brother Paul with his battle with cancer.
Our kids are so strong and they been through the death and dying with Uncle Paul so unfortunantly they do understand it some but it is hard on them too. They were all so very close to Gramma. When Dan called me and spoke the dreaded words "Its too late" I began to sob uncontrolable and bless Andres who really didn't know at the time what was going on but did everything in his power to comfort me. He gave me my Kindle and said lets go in the other room so we can snuggle. They asked is it Gramma. They asked if she was dead....guess a reaction like that speaks for its self.
I read "Heaven's for Real" to them several times. They requested it at least nightly for a couple weeks. I had bought it when my Brother Paul died so they remembered it.
Andres has a real good understanding of it. He's sad as we all are but his questions are appropriate and he asks about heaven and somethings I just cant answer but I think as hard as it is its theraputic for me to be counseling the kids through this all.
Aaliyah I think might finally be getting it. At the funeral even she kept asking what if she just all of a suddenly wakes up and sits up. She comes up with what I feel inappropriate questions and statements at times but she's only 6. She finally said Gramma's not comming back from Heaven is she.
NeVaeh has seemed quite well about it. She did fine at the funeral home and the funeral she was besides herself. We had trouble getting her to be quiet and settle down. Though when she saw mom in the casket she just waved at her. I'm not certain she understood it all. However Im noticing now when I take her to church she's quite unsettled. She is loud and doesn't want to sit still. It occured to me today that mom was always with me in church. Im wondering if this is her way of greiving.
(Pictures of the sunrise the day of mom's funeral)
Dan has been wonderful. It was very unsettling for him to see mom in that state. He has been my rock though. I don't know if I could get through all this without him. We did it 10 years ago with each others Dad's, He helped me get through Paul's death, now my mom.
All of this is making our Faith in God stronger and our Family and Love stronger.
Now one would think dealing with your mothers death would be enough on your plate to keep your head spinning and sanity on the edge but the day before I went back to work from my berevement I took Aaliyah to her Neurology appointment. He reveiwed her MRI/MRA with me. She last year was diagnosed with Moyamoya which is a vascualar disease that arteries in the brain constrict and constrict blood flow. Now last year her doctor told me it made a slight risk of having a stroke. This year I was completely blind sited. He reveiwed the films and said with the changes he sees he feels she will need to have surgery before she has a stroke. The MRI/MRA is being evaluated in another state right now by a doctor that specializes in PHACES syndrome.
We have no idea what is next if they will recommend surgery or something else but its all unknown at this point....also if surgery we don't know what state they will send us to.
Well after all this stress I am finally....surprisingly kind of calm now. I've come to terms that God is guiding us through the rough waters. I have asked Dan to come with me to Aaliyah's next Neuro appt as that was too much for me to handle by myself but I think right now I've found my footing. I don't cry everytime someone asks about mom. Yes I will cry when I think too long about mom or get in a moment that Mom should be with us. But She taught us to have faith! She taught us its ok to cry! She taught us God is there no matter what, no matter how, no matter where.
We have a very strong family. Our kids have been through so much that I believe they get through tough things like this maybe even better than kids who have never seen a loss.
Its already done. Hard to believe Christmas has come and gone...well we have one more celebration on my side on New Years eve. With some of us working professions that require working different holidays its hard to plan for anything on the Holiday with everyone. Anyway we did get our own family celebration done as well as with Dan's mother.
Our celebration.....
Dan's mom's celebration....
NeVaeh is more comfortable sitting outside of a crowded room and opening presents.
goofball!!
Andres and Aaliyah model their new jammies from Santa ;)
Must say I really felt the holiday cheer this year. I appreciate what Christmas means.
Hearing the music makes me miss brother Paul but it really makes me appreciate all he taught me about appreciating life and holding onto everything and one that's dear. I also feel my Dad near to my heart. I see him in me so much. It reminds me of him when I searched for clothes the other day to realize I they are almost all wore out. He would wear clothes that nearly fell off of him even if he had new clothes in his drawer. He told us there was more life left in them. Realistically he literally would take the shirt off his back for us. Now I don't see us as tight with funds as Mom and Dad were some years but I just don't find time to get anything nor is it any fun to get things for myself. Dan gave me a $100 gift card and told me to buy some clothes :)
Christmas is a wonderful day celebrating the birth of Christ! Our kids are learning about it. Not certain Andres knew anything about it before he came to live with us but Gramma does a nice job explaining it to him too.
God has blessed us with a lot!! He blessed us with each other! A perfect match!
He blessed me with infertility and there hasn't been a day I dwelled on it. We marched forward to seek adoption. Then God blessed us with Three beautiful children!!
Has it been easy....well no! Nobody said it would be..... But then what is life without challenge! It was a very difficult struggle to get to our second adoption with our last two kids. We were on a rollercoaster for 3 1/2 years seemingly like we were never going to get matched!
Now we have these two rascals they give us the run for our money. No two kids are alike!
NeVaeh is the quiet, Happy go lucky kind....yes she's non-verbal but she's also usually quiet...unless she's upset then well....She gets her point across LOL.
When the other two came along we had to learn how to deal with kids that could talk back LOL....
Andres is the sweetest gentle teddy bear! A very kind, Please, Thank You, I Love You, and always is concerned about everyone else...unless his meds wore off then the little grizzly bear growls through. Usually short lived Now but we get through it.
Aaliyah is a bubbly cute smiley little tricky fire cracker. When she says "I love You" hmmm....unfortunately its usually covering for something. She's a beautiful sweetheart but she usually has something up her sleeve.
We love our three little sweet hearts. Its a life long learning process. We are greatful that God has blessed us with each and everyone! There is no other family that would be just like ours cause ours is unique and beautiful!
I look at others and see how prim and proper they are.Look at the dance and sports and all. Envy the activities they bring their children too realizing that NeVaeh will never be able to do any of the activities and not certain Aaliyah ever should with her PHACE syndrome and MoyaMoya making her an increased risk for stroke. One look at her MRI and I've had doctors tell me they are amazed she can talk and walk! Andres should be able to do activities if his ADHD is managed and allows him to do so.
I make sure when there is an activity my children are going to that I have them dressed really nice. Dan told me it wasn't necessary but I said yes! These three are as good or better than the children sitting next to them. I realize many people know they have been adopted and the youngest two came from foster care. I don't want anyone to look down on them. They all three had a rough start on life and I want to do everything in my power to at least make them look better than the kid sitting next to them.
I hope everyone had a Merry Christmas and Has a Great New 2014!!
The kids had their Christmas Concert at school December 4th. Here's some tidbits of the program. Its amazing how much NeVaeh enjoys it.
Andres had their Sunday School program a couple sundays before Christmas. Here's a couple pictures of them up front of the church.
