Making money blogging and summer fun

Bella did great with the 11 year check up and shots. She didn't cry she hold my hand and breath out the pain and fear of the poke like a champ. 64 pounds and 4 foot 7.

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We now have a case manager who is helping with setting up appointments to try and make her absences 50% less then she had this school year.

I am also getting an advocate to help with the transition from 5th grade to middle school for this up coming school year. Our goal is to not have any appointments for for Bella school to call on Thursdays saying she has a temp and is having panic attacks. She been doing amazing this summer not one temp or panic attack. She gent's some cousin time we are having a sleep over with her cousin and they are currently watching 101 dalmatians on Netflix.

Last summer so so crazy and busy I couldn't even keep up with my apartment this summer we have been working on organization and minimizing .

Today Adam and Bella worked on Bin storage system and setting up her bedroom to be more organized and donated a ton of toys. I have to say this summer is going so great I even have time to work on writing my book. I had some ladies at a conference I usually attend pray for me to find time to write and I have so much time I don't know what to do with. I'm excited to see where this summer will take us.

Yesterday we had a tour of Adam new work a full time non contract position which a lot of you had prayed for him to find the right fit job. This job is so perfectly fit for him and the people he works with are great and he has his very own office with a nice kitchen to keep his food from home we can make him healthy meals for work and he is an It administration. All good things come. As all good things come to an end sometimes we no longer are income eligible for ssi. My goal with my website make some money to make up the difference or at least cover the cost of what I pay to keep the website going.  I have a few places where we signed up for our blog to be sponsored and I look forward to working with some Amazing brands. I have a few book launches I am apart of and I can not wait to have my very own book launch team. I have to finish my book first. I have 1st part done the hard part where I talk about my past. The second part is my healing process I'm struggling writing it down but glad to do so. It is very therapeutic for me.

Thanks so much for reading my blog and watching it grow into this beautiful website I couldn't have done it with out all of you supporting me/us.

Here is to new adventures and remember choose kindness.

 

Why does Bella needs all of her appointments every single Tuesday?

Update: it has been ages since I did a life update

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Tuesday are our days we take Bella to physical therapy and psychology.  We sometimes also see other specialist on the same day. Last month we ordered Bella's shoe inserts they are called chipmunks they are a plastic insert we put into her shoes and she wears them all the time. This is part of the treatment for Bella's leg pains that come from having a mild form of Cerebral Palsy. cp for short. Bella has digeorge 22q11.2 deletion syndrome and this is just one of the many ways we keep her as active and healthy as she appears.  Spring break we will pick up Bell's shoe inserts and she is excited about them for now. They stay in her shoes like dr scholls inserts. Her shoes have high arch and are new balance with insert put in. Bella loves running and is excited girls on the run has started up again. 22 laps around the gym every Monday and Wednesday. 

we had Bella's occupational therapy assessment and we have great news.... Bella does not need occupational therapy.  The other stuff will come once we are better able to handle her adhd both emotional and physical adhd and panic attacks a lot better. Bella does get tired more and she is on a mussel relaxer for the leg spasms at night.  We are to continue with physical therapy as that seems to be helping Bella so much with her leg pains from the mild cerebral palsy spasms.

For the psychology part of her appointments seems our girl is having panic attacks the joys of entering puberty and works herself up into a temp of 99.9. right down to tummy feeling sick and while everything her mamma has syncope.

  Seems on Fridays the school calls us and Bella has migraines and no one can tell what is causing them. Bella says the loud kids and sounds in her class but they are no different any other time of the week. I think it is something else all together. We will get down to it and figure it out even if I have to order a smiley face button spy cam to get to whats distressing her. 

Bella needs more self esteem building because she has been told how much she can not achieve at school vs what she can achieve at school. There is also a tight group of girls that Bella is not apart of. She is friends with two other kids who refuse to take part in the clicks which I am so proud of her for standing up for herself. There was a few things that come up where she was picked on by some other kids who claim they were just playing a little game with her but that worked it self out. Bella also does not like how loud the bus becomes. Kids in her classroom seem to be a little to loud for her to handle. We also have some issues where we have taken her to busy restaurant or concerts and the loud sounds bother her there too.

 

Other then the typical day to day stuff of routines and normal structure there has not been much to blog about in terms of updating friends. I did get a new couch and a dslr cannon camera that I am loving. I will have a gallery of my photos soon for all of you to check out

Thank you to everyone who has asked how Bella has been doing and wondering where my updates have gone. Over time Bella updates have been less and less and we are moving forward in the right directions in all areas of Bella's life creating that balance I have longed for since she was little.

oh and we are also getting a dog :) I will share photos of our new friend once we get him home. he is a rescue dog from the animal shelter. I can not wait to share him with all of you and introduce you to our new pet. The godlfish are still alive and going strong. I never realized how long gold fish live when you actually take care of them. The goldfish have been with us for the past 3 years.

 

Sometimes we just have to let things go

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.Checking off everything 22q related we were stumped on what to do for Bellas leg pains that kept her screaming at night. We were left wondering what do we do next. We took her to a pain specialist and not just any pain specialist but a doctor who specializes in locating pain and diagnosing pain. Within 10 minutes the doctor was able to figure out what we never could.  I have been learning more and more about what exactly cerebral palsy looks like. I knew the physical forms of cp you know people who are in wheel chairs or who use a cane but Bella uses neither of those. Infact if I did not tell you Bella had 22q or cp you would not have a clue anything went wrong at birth with her.

The invisible illness number 2 my daughter has. I do not worry about the cause because of how high risk and complicated my pregnancy was with her I am going to assume it was with that aspects. I had to learn to let some of my questions go and that we are doing all we can and have done for Bella

I have been told to help her breath through the pain those spasms and tears I watch her cry and wimper at night and we have her on backflen we also do physical therapy every Tuesday to address the pain and find different ways to try and relax the spasms.

I work with her spasms and knots and massage her but she does the hard part the deep breathing the crying and the letting out pain crys and the sighs in her face and the look of pain when I find that spot that knot is lodge into. The mini massage sessions last way into the night sometimes at 2 am I am woken up in her crys for me to help comfort her and rub her legs.

  If I had not gone through therapy I would not have been able to help my daughter with mindfulness and breathing relaxing techniques that seem to help keep her calm while I rub out knots and massage her legs and bottoms of her feet. I have it down to a science.

Bella can predict when we have storms and when it going to be super cold outside by the severity of her pain levels. The levels of inflamation in her blood labs are within normal limits. This time of year is the hardest and she been flying though with ease because of the physical therapy stretching and massaging we do every Tuesday. She misses out on so much school for medical needed appointments and if she didn’t have me fighting for her she would not do as well as she is doing. I am reminded why I write these blog post. I know there are so many other children who also have pain in their legs and 22q. The pains and leg spasms kids with cp are different then the pains that kids with 22q get. I know the difference I see it daily we tried the 22q treatments.

Bella teaches me that sometimes you just have to pray and breath though the pain no matter how tough life seems to get Bella will push through the pain. This week it was difficult she started swimming and had panic attacks because of her leg shaking getting on the ladder and into the pool she overcame it and actually got in the water which I am so glad to hear she is enjoying looking forward to swimming now. I know that when she is in the water it will help with her legs to stretch out her muscles and help her feel better.

Bella also had to miss two days of school she was sent home and had to miss out do to a temp of 100 the school sends kids home with a temp that high. I had to have her rest and recover and she is pushing through like a trooper back at school just 24 hours after her temp excited to enjoy swimming.

We have to sometimes breath though the hard stuff to get to the good fun parts of life. That’s what Bella teaches me and I am so thankful I get to be her mom and watch her grow and develop and mature into a lovely funny smart kind caring person she is. I am so looking forward to the rest of this year and all she will accomplish.

I am so thankful the biggest lesson Bella has shown me is sometimes we just have to push through the pains of life and move on with a smile on our face . Bella oven come her fear of getting into the poo she even did so right after recovering form that temp and completed her swimming test and is looking forward to swimming again this summer.

Sometimes we just have to let things go and not get worked up over other people's fears and concerns to make room for the positive things in life.

Lettings things go is now the thing I am trying more often.

I challange you to let some things go! List below in the comments what are some fears and concerns you need to let go of?

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What I wish I knew before I found out I had 22q

What I wish I knew before I found out I had 22q

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It been ages since I did a rant blog post!

I call this what I wish I knew about 22q because even after all these year efforts of research is still unknown of how this affects us who have 22q.

 There can be a bit of variability between each of the conditions. Such as 22q11.2 deletion can be a trisomy or there can be chd or no chd. You can have thyroid issues or no thyroid issues. You can have learning speech hearing heart issues or none at all. I wish I knew and understood that no two people with this disorder are affected by it in the exact same way no matter how hard I searched for answers and asked others who have it or have kids with it I always found out there are some similar characteristics but not all of the exact same symptoms and even if we had the same symptoms as someone else there are for different reasons.

I knew what Digeorge syndrome was but I did not understand velocardiofacial syndrome until a few years afterward I did not understand the basics of genetic 101 I can now probably teach a seminar class on it.

I did not know there is an entire country who wants to wipe out rare genetic disorders and completely get rid of anyone who is a big quirky odd or different with how God formed them. I did not understand why parents were shocked when I could raise my own family when I told them. I did not understand the hatred of people who have this disorder but yet claim their love for their own child they too will have a child who grows up one day to be an adult like myself.   I also did not think parents would never want their 30 year old live on their own and be functional adults in the real world I didn't know why parents were so over protective until I had my own child. I will not limit my daughter like some of the parents I know and have ran into but instead, encourage her where she needs encouragement and help her by nurturing her independence no matter how stubborn or strong willed my redhead has become at 10 years old. I am so thankful for her stubbornness because that is what got her through all those years of multiple doctors visits her leg braces and her dental work. That what pushed us past our limited views of others to help us reach our potential we ran a 5k together not many normies can say they did that. 

I understand now the fear is the unknown and the hate is not hated but it is grief it a loss of life they thought they were going to have. I get it I have my own daughter who has it. I too experience all of the awful mixed up emotional feelings that come from having this disorder but I did not allow my self to stay stuck. I educated myself and I am educating others so they know what to expect once knowing what to expect they can be hopeful that is the worst case or they can hope for the best case but either way there is hope after knowing what they are getting into.

Feeling pretty lost scared and confused is a typical day to day functional normal for us none normies who are trying to figure life out. Adjusting to routines and schedules is a challenge trying to manage just a two bedroom apartment can be a chore for someone like myself but here I am doing it basically wiping my own butt. I am shocked that others are shocked that I too can wipe my own butt and look after myself and not only look after myself but after others as well. I am a wife mom and step mom some define what I do a success

I am not impressed one bit by being someone inspiration simply because I am stand to own my own two feet and get up each day and do things that I have to do. I get some people can't I really do get that but to label that all of us with 22q can't do that is unfair and it is already setting more limits on the limits that are already in places. Screw the limits set by others is what I wish I knew!

 

I have anxiety and Adhd and ptsd but most days are good days medications are little because after all these years I have coping skills and things set in place I know that will help. such as sticky notes and how to guides I use a binder system to keep track of everything. I also have a binder for everything I really wish I knew about this binder system that I use. It would have made high school so much easier.

I wish my passing out spells I had in high school were vaggo vessel and that I just had to take this pill for and it would all go away. It does not go away with just a pill I wish it did.

It can be scary to hear your child has a genetic disorder. It can be scarier to know you also have the disorder what is even scarier is knowing you have a disorder and having a child any how because hey life happens and birth control is only 99.9 effective.

I see these worst case scenarios in support groups and such and watch others just stare and hear crickets when I write a post about the good stuff but when I write about the bad everyone comments. I wish I knew I was only a relatable human being by sharing about my stomach filar ups. I would have written a blog post and shared pictures of every time I picked and hugged the toilet bowl I wish I knew you all would cheer me on for that. I wish I knew what I needed to do to be part of a support group to be a team player rather then having to create a blog and website and from my own tribe. I wish there was a tribe for me where I could fit in but it is what it is. I wish I knew life is what it is before life got all messy by my trying to fix it and help others.

I wish I knew how to handle the stress from the nonstop specialist and pt and ot appointments we had to attend and that I had to attend while I was pregnant and after. If I did I would not have ended up in a 72 hour phyc hold with an over dose of Ambien just by mistakenly trying to simply sleep because my brain wouldn't shut down. I wish I knew how to write about that moment to help others to prevent others from going down that path that I did. I wish I knew about 22q.

I wish I knew my brother who passed away from having 22q at 6 years old. I wish I knew what I outlived him. I wish I knew why God takes the little child and not me. I wish I didn't have a second hospital trip for a medication over dose because I didn't know how to process grief I didn't know how to deal with my father who disowned me who has 22q as well. I wish I didn't learn these coping skills from my step mother who enjoys attention seeking behavior choices and takes tynole by the bottles when life gets too shitty for her. I wish I understood mental illness when I was a teen.

I wish I didn't have to have a complete mental break down after I had my daughter when she was 1 and another when she was 2. I wish I knew I had ptsd do to the major abuse and neglect from my parents. I really wish I didn't have to hold all of this in until I was 25 years old. I am 34 years old and I really have only enjoyed living life since that last trip to the mental hospital. I am recovered by the grace of God I understand why God allows bad stuff to happen to good people I didn't know then I wish I knew that too why God allowed 22q. 

I know now I know from the bible study's from the medication from the teachings from all the years of hard work in therapy. I wish I could pass all of this knowledge on to others so hey don't have to feel so crappy about having 22q or living with someone who has 22q but what I know is people are going to do think act and feel how they want and there is nothing I can do to change that. I also wish I knew I would make and lose friends who have 222q based of what others perceived about me. I wish I knew all of this about 22q

I wish I didn't see this from a parents perspective and also somebody that suffers from it. I wish I knew all of this about 22q.

I wish I knew that insurance did not cover anything related to my daughters health condition and that having children's special health was useless because Medicaid will cover generics of what she needs.  I wish ssi knew what 22q digeorge syndrome was and that it not going to get healed because she can speak. I wish I didn't have to appeal ssi or have to deal with ssi every time we tuned around but only one of us can work because I have no ablity to stay at a full tme job with the ups and downs of my own illness. I wish I knew there was more support.

I wish I knew all of this about 22q.

What do you wish you knew about 22q ?

 

 

 

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Rare Champion of hope nominee Amanda Ripsam for 22q advocacy

I am honored to be a nominee for the rare champions of hope

My husband Adam and I

My husband Adam and I

I am honored to be a nominee for the rare champions of hope. Hundreds of individuals and organizations worldwide were nominated by their peers for the 2017 RARE Champion of Hope awards to honor their notable efforts in rare disease advocacy, science, collaborative sciences, and medical care and treatment. Please see the full list of nominees and a map demonstrating the various locations of those nominated below.  The purpose of the Tribute to Champions of Hope is to recognize those who are uniquely attacking the challenges they face in the fight against rare disease; those who are thinking outside of the box and working tirelessly, not focusing on what was, but setting their sites on what can/will be. 

I have always been focused on the what I can do vers what I can't do as an adult and mom who has 22q and raising my own child with 22q11.2 deletion syndrome. I also have a father and three siblings one of my siblings a half brother passed away at the age of 6.  In total there are 6 of us with 22q in our family. I bring all kinds of perspectives and that's where my passion lies in honor of my brother quietly of course and in providing hope for my daughter. I share my story here on my website and have blogged since 2014 since I started blogging there have been so many other 22q people who have also wanted to blog and some people even want to do all that Bella and I can do. At first, it was not easy doing the research talking to doctors hunting down specialist but I did it and now my daughter is 10 and I'm trained and ready to speak out and up for this disorder that is unheard of so often way too often by er doctors nurses and teachers.  The people who interact with my daughter all are aware of 22q and that made me have the desire to spread awareness the old fashion grass roots way of word of mouth to everyone and anyone I can.  My passion is why I am honored to be one of your nominees to share my story if i can not attend I would love if everyone who hears about me and my story to subscribe to my blog so I know how many are out there who want to hear my story.

2016 Tribute to Champions of Hope Recap

The 5th Annual Tribute to Champions of Hope was host to 670 attendees and 27 honorees. The night will be remembered for its courageous honorees, touching acceptance speeches, and amazing performances. 

I am in the black top Bella is in the one in the red 22q hat and Adam hubby is in yellow. We are standing with friends for a picture from last years 22q at the zoo in Grand Rapids Michigan we had a small but mighty group spreading awareness

I am in the black top Bella is in the one in the red 22q hat and Adam hubby is in yellow. We are standing with friends for a picture from last years 22q at the zoo in Grand Rapids Michigan we had a small but mighty group spreading awareness

The link below shares the list of others who have also been nominated.  This is a huge honor and I thank everyone who voted to get me here.

I also thank every single blog subscriber and everyone who has been supportive of our journey.

Love Amanda Ripsam and Family

https://globalgenes.org/2017nominees/