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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How to handle doctors visits with special needs kids like a boss! or our trip to U of M

 Hello everyone,

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I am going to dive right into this one as I am excited to share the news.

 The reason for the doctors visit is Bella has 80% hypers-nasal speech means when she speaks air goes up her nose is what the test showed at the last doctors visit.  

In Aug, in fact, we were scheduled to go ahead and correct this issue she has with air by fat graphing which involves fat from some part of Bella (I wasn't sure where they were going to find any fat on her)  I was wondering if we should wait it out until she passes puberty or just go ahead and do it now and get it over with.

The speech doctor at the clinic had to perform her speech test on Bella by asking Bella to say funny sounding sentences. Bella had to say words while pinching her nose, followed by the breath o her breathing on(magic mirror thing a ma jigger) I am not sure what it was called but it goes under Bellas' nose and you can tell if there is air in the mirror if it clouds up or not. Bella had no air on the mirror this time.  Last time the mirror was all cloudy.

Bella then had to sit with a fun looking space helmet on her head and speak into a sensor while she said the same funny worded sentences. Bella scored a perfect normal on the test. 4 times. Normal from 80% is something only short of a Miracle.

I don't even think it sunk in yet. Bella was thrilled and thankful that Bella did not have to have a camera go down her nose into the back of her throat.   It was a shock to both of us no surgery needed  Bella will go back for a team visit soon as they can fit us in to talk to the team about our next treatment plans.

Below is some info on what Velopharyngeal or for short Vpi is

 

 

 

 

 

Bella playing in the play area on the 8th floor after to burn off her energy before we headed home

 

I know I asked all of you to visit my website to hear about this trip because it is such great news it was difficult to talk to 100 different people and I can not keep up with that many questions. If you do have any questions feel free to leave a comment on the blog in the comment section below. 

Thank you for reading. Bella looks forward to seeing your likes, comments, and shares and she said she is super excited she does not have to have surgery.  Bella is a 10-year-old girl with 22q and cerebral palsy. I am a mom who also has 22q. This is our journey and I am sharing to help others out there not feel so alone.   Don't forget if you like it subscribe (Purple button top right of the homepage)

Until next time take one second at a time.

 

How to get transportation to doctors appoitments with Medicade?

I have had a huge amount of people ask me how do I set up transportation with Medicaid and get transportation to and from doctors visits. I travel from Otsego, Michigan to Ann Arbor every summer for a specialist who sees Bella and knows what 22q11.2 deletion syndrome is as our disorder is hard to find someone local who understands. I lucked out and have an amazing pediatric doctor who understands and has a few other clients who also have children with 22q11.2 deletion syndrome.

I simply called the back of the Medicaid card Bella is on United community plan with children's special health care as that is the provider who is most often accepted and taken by the specialist that Bella sees.

1. I listen to the options and hit the number for the transportation. 

2. you need to have the address of where the driver needs to take you so you can get thereand the time of your appointment so you can get there in a timely manner

3. Sometimes there will be other clients who have to get in the car with you and they have to go to their appointment as well.  

4. you will have to put aside a day to do this and it helps if you bring things to do for the card ride sometimes you get a friendly chatty driver sometimes the driver wants to just get you to and from

5. It is covered by Medicade so the cost of gas is not on you. If you can get another person to drive you to your appointment you can call and ask for transportation reimbursement for mileage.  We have done that a few times and it really comes in handy. It takes a month or so do not depend on that gas reimbursement to be part of your budget consider it a nice bonus when it arrives

6. If you need food or lodge basically food to eat and a place to sleep while you have your appointments you can call the social worker at the hospital if you are having an operation or overnight sleep study and they will help set everything up

7. Pack a busy bag for you and your child nothing worst then having to be in a car and your child is whining how bored and are we there yet cause they have nothing else to do.

8. Bring snacks and yes you can bring something nice for the driver offer coffee or lunch sometimes they do accept gifts other times they say no thank you considering were on Medicaid we qualify and don't have the disposable income to buy strangers gifts.

10. Enjoy the trip and say thank you to your driver's kindness goes a long way.

 

 

 

If you need transportation to appointments and are on Medicaid this link has a lot of information on how to get a ride to your doctor's visits.
http://www.myride2.com/transit_providers/logisticare-medicaid-transportation/

Since we are going to Bella's play therapy today I figured I would share this post because so many of you have asked how to do this. I wasn't told about it either until I needed services. I have run into so many people during my doctor's visits in the waiting area just asked how I managed to get rides or they see my blog and have seen the post about how I used transportation to get from where I live to Ann Arbor which is a 2-hour drive. They also do gas reimbursements.

It requires planning and making sure you have name and address of where you are heading to and phone numbers of doctors offices and you can only get picked up at home and to the appointment.

I hope this has answered some questions.  Of course I have ran into mishaps and some issues with the people who answer the other end of the medicade line who would rather do anything then be helpful and do their jobs or they want to pass the buck on to someone else. However you can always ask to speak with a supervisor if there are any issues with your arrange ride or if anyone has been rude or such to you.  I have had a few run ins with the call center but they seem to fixed up issues after I dealt with it. I have never had any issues with the transportion drivers other then one time my driver never showed up or called and my appoitment had to be cancelled that happen twice to me during winter storms. So in the winter time in Michigan use transportation at your own risk

 

Call the back of the card to get transportation. Hey it beats missing your appointment, or having to ride your skateboard across town with the kid in tow.  Not that has ever happen but I liked this picture and wanted to use it for this post.

Call the back of the card to get transportation. Hey it beats missing your appointment, or having to ride your skateboard across town with the kid in tow.  Not that has ever happen but I liked this picture and wanted to use it for this post.