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!!!
Our son is a very sincere kind hearted child. He is very loving and speaks what he means. There are no secrets from him as he has no ability to keep a secret LOL.
He has grown so much since he came to live with us in march and we are so excited to see his ability growing as he comes home actually spelling words and able to memorize our home phone # !!!
In the morning our baby is like a loose canon ready to explode!
In the world of ADHD and PTSD premed times for him and us are hellish to be blunt. Our little angle sharpens those existing little horns and litterally dances on the table amongst other things.
An hour or more after the meds kick in he has turned back into our glowing little angle. He thrives with praise. His early years were very rough and we cant fix that but we are doing out best to make his now and future stable and good.
He is doing remarkable in school now... Go Andres! Keep it up!!
Showing off his new dinasours :)
Helping clean the pool so we can take it down for the season.
He loves his big sister NeVaeh and shares his movies with her. He looks out for her :)
She has been working on the Ipad all summer on the Talk Tablet app for communication. Over the summer we went to the Sanford Castle weekly for ST to get used to it. She now is back to school and gets her ST there 4x a week and at the castle every other week.
She ordered her food at Dennys the other day and was able to figure out what she wanted without any cuing. She is able to navigate around it really well! I have it programed pretty complex and was afraid it was too hard for her but she always seems to find where she want to go. The app is great as it can be as simple or complex as one needs it to be.
She was fussing about dinner last night so I gave her the Ipad and told her if she could tell me what she wanted I would make it. She was signing chicken. I said I know you want chicken but tell me with your words. She found it in seconds! then proceeded to go the freezer and get it out :)
This seems to be really opening a new world for her. The ST found a way to lock her app so she cant navigate out of it so that also helps. She has a long way to go but this is so exciting!
She did have a rough September seems she just couldn't get over being sick :(
She started the end of August with a sinus infection and couldn't quite get over that even with two courses of antibiotics then ended up with a mysterious rash.
Shortly after that cleared up she again go very sick and throwing up. Ended up with pneumonia and UTI. She again had two different antibiotics :( . This time she again ended up with a mysterious rash. The Doctor thought is was some kind of strepp infection. I though it was the antibiotics. It cleared up using a steroid ointment a few days after her antibiotics were complete. Guess we will find out if she needs the antibiotics again if it was that.
She's feeling pretty good now with still a little cold symptoms but nothing too bad anymore....lets hope it stays that way!
I managed to take some pictures of her the other day :)
She is progressing with her communication though she isn't saying much for words right now my 8 year old is doing great with communicating. Her messed up chromosomes just continue to be a challenge for her. Nobody can tell her she Can't do something cause she will just in her own way in her own time.
This is her world of 1p36 deletions syndrome/12 q duplication Syndrome
Wow so much going on with each child right now each one deserves their own entry.
Little miss muffit has been doing well going to preschool 4 afternoons a week.
She has a very sparky personality. Her little body in the 7th percentile is made up for with her bigger than life loud voice and sometimes defiant personality.
Don't get me wrong...She's a really good girl but she's strong willed and don't like to back down but when its all said and done she comes and crawls up in our lap and wants to snuggle.
She just yesterday had laser surgery on her Hemangiomas on her face. She also had a MRI/MRA done.
The surgery lasted all but 15 minutes but the test lasted 2 1/2 hours. I had to have someone call back to see if everything was ok as I wasn't prepared for it to be such a long wait!
Suddenly she was brought back to the room already awake but sleepy. By the time we got home you wouldn't have known she was under most the morning as she was as ornery as ever...LOL
This is her world of PHACE Syndrome. She has a pretty mild case and hopefully the tests will show her vascular system is ok. An old MRI/MRA showed some narrowing of her carroted artery so they want to check it out.
Before laser
After laser
Day after laser surgery. The doctor said it will take a couple weeks for it to fade.
With my brother just passing away I didn't have much time or energy to plan a party so we went to Pizza Ranch with my mom and one of my brothers and ate. The night before Andres and I went to town to get gifts for her. It was a small but fun little Party. We just couldn't miss her birthday. I felt bad we didn't do more but I had ordered the cake topper from Ebay a few weeks prior so I already had Curious George ready to put on the cake. :)
We hope to get together with the little cousins soon!
Hmm! Don't quite know where to start on this entry.Guess I will start by saying look at our wonderful family! We are rock solid even when some not so happy events happen. Dan is a very solid rock and super support for me when I try to keep it all together. I love him dearly and have to say "Thank You so much for all the support!!"
My brother just died of cancer :(
I have spent the last couple weeks going to his place taking turns with my siblings staying over 24/7 taking care of him and giving my mother support so that he could get his last wish of dying in his home. Dan was almost a single dad for a while and he did super! The kids held together well also!
We will miss Uncle Paul. This is him the last time he came to visit On 8/9/12.
Here he is performing at the cancer survivor diner this summer.
With the kids just starting school while Paul being so very ill everything tended to be quite the challenge. I have to say I wasn't actually sure if everything was all getting done. But we managed.
Poor NeVaeh got sick through it all and is still coughing up phlegm. Just not sure what she has going on. She's been on Antibiotics for a week so I called the doc to change that to see if we can get something different for her. She just looks miserable. I worry about her.
The funeral was a challenge to go to with the three kids. Aaliyah didn't ask too many questions but Andres asked the appropriate questions several time of why did Paul have to die and such.
A good friend of Pauls left a book "Heaven is for Real" I read it to each of the kids and that seem to comfort them.
Death is not a subject I ever wanted to discuss with children but they seem to do ok with it. We started with the discussion about a week before he passed away and they had a little difficulty with it at that time in fact I believe Aaliyah actually seemed to understand "Heaven" better than Andres. But when it actually happened Andres handled it better and seemed to mourn better than her. She seemed to exhibit behaviors and avoid any subject about it. He would discuss it candidly
.NeVaeh had some problems the night after he passed as she was just beside herself. We had a very difficult time consoling her. She didn't know what she wanted. I finally just hugged her tightly and rocked her back and forth. I realized she watched them take the hospital bed out and all the equipment out of the house so I'm sure things were really bothering her. She too loved Uncle Paul. It is sometimes hard when your 8 year old child can't talk to read the unspoken body language. She calmed down and was better after the TLC. NeVaeh only made it through half the funeral but then she can't make it through a whole church service anyway. She was also feeling miserable.
The morning of his passing there was an extraordinary sun rise. My husband was able to capture some of it on pictures. He said the pictures don't do it justice but its God taking Paul to Heaven!
Wow this summer is flying by! We have been busy to say the least. Hard to believe only a couple weeks and School will be in full swing! (Yay!!!) LOL
We have been settling in with our bigger family and they have been adjusting well. Both them and Dan and I have learned how to deal with behaviors and issues that pop up. It started a bit rough this summer but have simmered down and all is going pretty good right now.
The kids have learned lots about country life that they never knew living in the city. NeVaeh has adjusted well also being a big sister.
I went back to work full time June 10th and Dan has done wonderful being a stay at home Dad.
The kids love Swimming and Playing on their playset in the back yard. They also watched the hay baled and thought that was cool especially when they could sit on the big round bales.
We went fishing the other Day and the two loved that. NeVaeh and I liked to watch and play in the background.
The fair is this week we hope to catch that one day. They also watched the weekly Children's play at Mckennen Park that ended mid July.
This all bundled with Numerous Doctor appointments all the kids had made for a super busy summer. There was almost no day left to do just nothing. NeVaeh has enjoyed her weekly ST this summer as she has been working hard with her Ipad working on a new app for communication. Hoping it will do her well when she gets back to school.
