We are done with the tape thing

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. Our last physical therapy appointment Bella got some special tape to see if it would help lessen the pains in the bottom of her feet.

Mild cerebral palsy treatments are why we are going to physical therapy every Tuesday.

 

How it feels for me as a mom to see her in pain is exhausting and heartbreaking to have to take any child to so many doctors visits and watch her cry at night while all I can do is hug and tell her we will make it though.

Not every visit is heartbreaking even this visit we both were totally fine with the idea of the type on her feet and excited to start a new treatment but the first time we added the tape Bella was up all night crying in pain from a sensory meltdown and panic attack.

I had to have my husband call the school at 130 am which sometimes we often have to do and say please excuse Bella absent in the am as she didn't get enough sleep and is in major pain.

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This is the tape that we had picked up the same one the doctor showed us but then we had to try another brand and foud Meijers brand seem to do the trick

 

I rub her feet with lotions and do my magical reflexology and mixes to help soothe and ease her pains. The backfen she is on at night is not even touching the pain.

The doctors are not wanting to up the med or change it until we do and try all other options and I am in agreement with them because nobody likes to add more meds to a child's body.  So we do baths soaks and lotions and heating pads.

I look online late at night sometimes until 3 am not sleeping learning all I can about mild cerebral palsy because let's be honest if it was major cereal plasby or another form of it I would visibly see it and understand.

  It broke my heart tonight listening to her sob in tears saying, mom, I just want to be done with this type thing.

Begging to hurry the ankle braces process up but insurance issues and process get in the way

I told her I understand and I hear you but this is something we have to try and do first so we can see if it helps and if it does not help we can try other things. T

rial and error test subjects not knowing it all is scary and frustrating and for my 10-year-old to feel like mom what's the point of the tape is not helping I have to go in and say look we attempted what's next.

Not ever knowing what is next is not fun.

Treatment for this like everything else is unique and not two people with cp are the same shocker neither are no two people with 22q and here I am alone in a new world trying to find answers to treatments that will help. 

Bella being 10 has a lot going on in her body as she is not little anymore and is growing up and soon will be a teen. I have to adjust to new things every time I turn around and so does she. Bella has a lot of growing going on, puberty happing in droves and then we have day to day things like attending school and keeping up with all of the work forms the doctors visits Bella misses out on.

Trying to always put on my brave face It is a lot of pressure and sometimes I feel like what if we homeschooled then I wouldn't get asked from so many people why does she need to have so many doctors visits she looks acts just like the other kids. If I hear that one more time I just might explode. 

I remember we have had a lot more visits then once a week we had seizures and all that is in between but this tape thing something so small and may not even be helpful is what is getting the better of us tonight. 

I need to put big girl undies on and suck it up buttercup because we all have issues.

I hold back my tears I told Bella the braces will come in time and that we are wanting to see if the tape will help ease some of the pains she has at night from the spasms of cerebral palsy spastic issues. Since her feet pronate we have discovered the tightness is not only in her legs but also on her feet.   I didn't tell Bella that I too want to be done with this tape thing

Bella, as you know, is a runner we did a 5k race last May and is very active during playtime outside and with her friends so she is busy on her feet.

The first attempt at putting the tape on Bella had a sensory meltdown on top of a panic attack

over the tape. Tape sensory issue so we bought a Meijers brand of tape and she likes it a lot better than the more expensive brand name tape.

Who knew there would be such a different but Bella does. The fact that Bella poor feet couldn't handle even just a little bit of the more expensive tape and had no issue with the Meijers brand tape tells me that the tape she using isn't really helping at all but then she said it does help a bit and her feet feel great after the ordeal of adjusting the tape and cutting the tape down into pieces.

I don't know a single person out there who has to put tape on the bottom of their kid's feet but I would love to hear what brands colors and textures of tape are out there that have been successful. In the cerebral palsy world, I am a newbie in the fact I am still adjusting to this new normal for us and that nothing that the 22q world in terms of treatments has helped we been there done that.

The cerebral palsy world I know the extremes of people in wheelchairs or using canes to walk around. Bella while Bella looks and appears like any other child. My Bella is in a world where she does not fit a mold. I have to adjust my knowledge and understanding from the 22q mentally to the cerebral palsy mentally Bella was born looking appearing and acting like any other typical child but then Bella is full of all these minor health issues where her needs are special and she is unique. 

 

mentoring/tutoring/coach

If anyone needs help with their 22qt for tutoring, let me know!

I am willing to help through skpe or facebook video chat.

I have a bunch of tips and tricks that worked for me in school and a ton of what has helped Bella. I also have some mentor sessions I can set up. 

If interested let me know via the contact me button on my website.

How does 22q effect both mother and child ?

I have mention 22q11 (22q) or DiGeorge Syndrome at some point or another on my website and blog and a lot of you still ask me questions about what exactly is it and what does it look like. That's why I started this blog to share with others knowledge of this little missing piece of dna and all the stuff that goes along with it.

 22q is what Bella and I both have it is caused by the deletion of a small piece of chromosome 22 and the deletion occurs near the middle of the chromosome at a location designated q11.2

1 out of every 2,000-4,000 children are born with it, but to be a little more detailed – 1 in 68 children with congenital heart defects, and 5 to 8 percent of children born with cleft palate will test positive for it. 22q11.2 deletion is almost as common as Down syndrome.

The blessing we have is neither Bella or I have congenital heart defects and Bella was born with a soft palate, not a cleft palate.

So, what could we be facing? Well the list of issues associated with 22q11 is pretty long, but I’ll cover the more common ones, and how Bella and I are doing so far.

 

Heart Defects: This is probably the most common symptom of 22q11 and one of the red flags for it. Particularly Tetralogy of Fallot, Truncas Arteriosus, Interrupted Aortic Arch, and Ventricular Septal Defects (VSD). This is is never an issue Bella or I have ever faced however while developing Bella had extra blood pumping in the lower left chamber of her heart with a small hole guess what happens to that hole when Bella was born it closed up on it's on my magical baby that's for sure. 

Heart issues for me is my heart beats faster I have vego vassel syncope means my heart races when under stresss or pressure and I pass out but you know no biggy compared to some of the bigger stuff I mentioned earlier.

 

Cleft Palates: Bella doesn’t have one, but she did have a ton of nasal regurgitation (her spit up would come up through her mouth and nose), There was so much puke in her earlier years we saw every specialist you could think of and had swallow study to get her formula thicken to honey and now 10 years later my bottomless pit eats as much as my 18-year-old stepson.

 

Feeding and GI problems:   Bella did struggle with swallowing and feeding by breast milk we had to thicken her formula to the honey-like texture. 

I have the worst of the issues when it comes to feeding I never had these issues but after I had Bella my stomach became paralyzed I think it was a slow transition, not something I was born with from 22q but from lifestyle and diet and the extra weight I gained while I was pregnant with Bella.

 

Immune Issues: We are lucky in the fact we saw an immune specialist and they are shocked and oh so baffled at how they say her Thymus gland by ultrasounds and blood work on both her and I is perfect. shocker I know but so is mine. but they did a blood test after she was born which shows she has an immune system.   My birth mother has hypothrism but she does not have 22q my father has 22q and his thyroid is fine too. I don't know much about my parents to weight in on how this has helped us in our life but we have no issues with thyroid issues so many people are baffled and say we must since our genetic test shows Digeorge but that just isn't the case in our life. We did luck out in that aspect. Which I am forever grateful for and want and need other people to understand that.

Growth, Cognitive, Development and Speech Delays (learning difficulties): This is where Bella differs then I do and struggles more with. When it comes to development she is a year behind developmentally. The speech delays are language processing disorder that is often associated with children who have ADHD which Bella does have. We are in speech therapy once a week still even at 10 years old to help Bella organize her thoughts and speech patterns.

Kidney problems: Bella kidneys are perfect and functioning at a normal level.

I myself have kidney and gallstones which goes with the gastroparesis issues I mention I struggle with earlier.

Hearing Loss: I have the biggest issue of the two of us. My eardrum collapsed when I was younger about Bellas age and my ear had this click sound every time there was a sinus infection or the starts of sinus pressure. 

Bella ears are perfect she did have one set of tubes in her ears but they were taken out and she has been talking none stop ever since. The hearing with Bella is not the issue it is the listening part that she struggles with.

 

Behavioral and Psychiatric Differences: Adhd and Aniexity issues are what Bella and I both deal with however we are not dealing with schizophrenic behaviors at all we have both been testest fully. I have to put this out there and share our truth and tell everyone this fact because there is a group of people fears mongering others to think this is how their childmight be when they are older.  I am here to saying and setting the factual record straight since I too have 22q but not schizophrenia.

I do have ptsd from the abuse I endured as a child cause no one knew what it was I had growing up.

Some examples that 22q11 kids have a higher risk of developing are ADHD, autism, anxiety, schizophrenia, depression, and bipolar disorder. There is a big huge debate as to if all children with 22q have schizophrenia

I can assure you that is not that fact we Bella and I do not have schizophrenia or and do not have schizophrenia traits.

I do not have bipolar neither does Bella.

I am well into adulthood at 34 and I want to say that that study where people who were had been tested positive for 22q deletion but 22q deletion is as common as down syndrome then that means that people who have gone years without knowing they had 22q showed up with schizophrenic and now the 22q community is stigmatized with it and doctors are asking questions to their patients that are biased when they do testing for mental health issues this is a topic you should be watchful for. I also know other adults who are not schizophrenic and that test was done by a doctor who had tested a handful of people who were schizophrenic and discovered they also had 22q nothing more nothing less but the media and 22q groups made a big frenzie out of it to draw attention and create fear.

There are people who have 22q and have schizophrena so don't think you can't have it just be open minded to the idea it could or could not happen.  End of rant

There you have it a small blurb you all have asked about how 22q effects both Bella and I

I hope this helped and if you have any questions or comments feel free to leave a comment below and share about your experiences.

 

 

Isabella story is on 22q family foundation website

 A post that was shared on the 22q family foundation website years ago. This blog is a continuation of that story.

I have a father, three siblings, myself and my daughter who all have 22q deletion VCFS digeorge syndrome.

Testing of not only the child but of both parents is very important in getting the help you need to take care of you and your child with 22q. Here is my story.

I’m Amanda Ripsam. I have VCFS 22q digeorge syndrome. As mentioned above, my father my three half paternal siblings as well as my 4 year old we all have 22q. I did not get diagnosed until I was 21 years old.

My brother was the first of us to get diagnosed after he had his first seizure which happen after we ate turkey one Christmas Night. He was treated for hyoocalciuma and low iron levels. He is developmentally behind and had a learning delay as well as a speech delay. My sister is more developmentally behind then my brother and she also has a speech delay hypocalciuma seizures and low iron levels. They were given reccaltrio and calcitro for the calcium issues. Sadly I lost my 6 year old brother to a seizure; he died in his sleep while having a seizure. He hemorrhaged in his brain and that caused him to die.

I am 29 years old and my birthday is Feb. 10, 1983. I was born in Toronto, Ontario Canada. I moved to Grand Rapids, Michigan when I was 21 years old. I got diagnosed at 21 in Canada because the test at the time and the treatment and such would cost around $5,000, which I didn’t have so I went back to Canada to get tested and treatment. My ear drum collapsed when I was 11 years old so they put tubes in my ears every year to help correct the issue I remember getting speech help when I was in school that was with out knowing I had 22q.

I got pregnant when I was 24. I also got married and I’m a step mom to three kids. I did have a complicated high risk pregnancy. I refused an amino test as I knew I could have my kid and get a fish test. I wasn’t planning on aborting my child healthy or unhealthy. I always was sick during my pregnancy. I don’t think there was a day I didn’t throw up. I started to pass out and they put me on bed rest.

I had developed the hypocalciuma as my daughter was pulling the calcium from me and no matter how much calcium supplements I was given to take or milk to drink it wasn’t enough. My levels stayed at three during my pregnancy; my iron levels were also around six. I couldn’t afford the medications to treat so bed rest it was. I had a lot of embrotic fluid I started out being 135 pounds and my last weigh in for pregnancy was 198 pounds. I’m only 5’2.” You can imagine the leg pains and the back pains I had. I gave birth to a beautiful 7 pound, 5 ounce baby girl. She started to turn blue and had tremors in the hospital. I urged the doctors to do a fish test. They wanted to wait a week. I was against the waiting; I said it needs to be done now. They tested her and, sure enough, she has 22q deletion she had hypocalciuma feeding issues. We ended up having to thicken formula with rice to the consistency of honey. We did a swallow study and I couldn’t breast feed her because she would puke it up threw her nose. I did pump my milk into her formula to mix it with the formula and the rice to add more nutrients.

She has had speech delays, hypernasle is 80 percent and she has low muscle tone in her palate in her upper mouth so we have to send to a palate specialist which we are waiting for the first appointment. We also have her in speech therapy. her articulation has improved she also has had tubes in her ears. They just took them out with a paper patch and she’s doing great. she has had two cavities and gotten two fillings done. The doctor just put her on clairtion for her allergies and that’s helped with the runny noses and the dark circles under her eyes are starting to fade.

She has sever constipation issues. We have her on maralax one cap full and one teaspoon full a day. She has sleep issues so we give her melatonin at night. She is also on a b6 complex because of her irritability and behavior issues. She will be happy one minute and in a tantrum that’s uncontrollable the next. she is also in preschool 5 days a week from 9-12. she is starting physical therapy for severe leg pains. She has had a number of seizures absent and fiberal seizures. We have been told they are more behavioral disorder issues then seizures we have been refereed to a neuro physiologist which with her behavior issues its hard to deal with some days.

I know she’s had a few seizures and tremmers and we’ve been seizure free for a year. were starting to get answers and she’s just starting to get the help she needed since birth I been telling drs but they are reclucent to do anything with kids so young. So now at this point she’s off her seizure medicine and were waiting for the first neuro physiologist appointment. I would love to be seen at chop but we can’t afford two air plane tickets I’ve neven been on a plane let alone be on a plane by myself without my husband. The hospital will only pay for one child and one parent so I’m still trying to deal with figuring out how we can get her and I treated here in Michigan. I’m willing to meet up with people in Grand Rapids area and talk to anyone who has any questions as I’ve met a ton of people online who have 22q. As for me, in terms of career, I’m putting it on hold for my daughter so I can be with her full time. My husband is looking for work in the computer networking field and I did a hair stylist apprenticeship. It didn’t get my license and I am about 500 hours behind in my apprenticeship as I ended up getting sick more often then I was at work so i think for now I’m going to be the at home mommy for the next little bit.

My hobbies are playing my guitar, doing photography and photo edits and I like to meet new people and help others.

 

Isabella wants to raise awareness of speech issues

Hello, everyone, You might have read about our doctors visits to Mary free Bed and that we have appointments on Tuesdays in Grand Rapids after Bella neuro evaluation was done we are officially starting the treatment process and I wanted to share with all of you in hopes it helps others who have speech issues to know you are not alone. 

Bella wanted me to write a blog post to share about the treatment of speech issues and to help others who are going through the process and also to bring awareness about others who do not know what a speech pocessing disorder looks and sounds like.

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Speech and language processing disorders is what I am sharing about as that is one of the treatments Bella is going through and I wanted to share to help others who have children who are also going through speech therapy with their children.

This month is not only back to school for Bella but we also started speech therapy every Tuesday.we will have sessions. that will help Bella with programmatic language and language processing disorders. 

First I wanted to share with you some information on What are Programmatic language and language processing disorders?

Chances are you too are wondering if your child is struggling with this or if other children are struggling with the same issues Bella is struggling with. 

While speech and language therapy generally help phonological and expressive language difficulties (speech), there is less evidence to support its effectiveness in helping receptive language difficulties.  The receptive disorders are where Bella struggles in and that is common among children who have 22q11.2 deletion syndrome. Typically with speech therapy, they can improve and live fully functional independent lives but you need to stay on top of these appointments and therapy and you have to have a treatment plan that is individualized. To help receptive language, you need to exercise listening skills, not speech.

  If you meet Bella she can talk circles around anyone and will tell you stories and talk for hours and miles at a time. You can understand her sounds and hear her very clearly.

With the hypernality issues almost gone she is doing so well you would not know where to start when it comes with Bella but after her neuro evaluation we can see an entire picture of her issues and we know where to begin and have started the process to treatment plans.

I am lucky to have speech, psychology and physical therapy appointments every single Tuesday all on the same day yes they are back to back and even makes Tuesdays very long days but the goals and treatment are worth all of the effort, time and even money that is spent to get these therapy done. 

Treatment goals are to start tackling cognitive listening skills.  This includes auditory processing, working memory, listening accuracy, listening comprehension, attention, sequencing.  These are the foundational skills for receptive and expressive language.

For At-Risk Readers which includes my Bella when she tested at school, she fell in the high-risk category kids with attention issues usually fall under this category and Bella is about a year behind developmentally so I was not shocked to see this is where she was at.

The treatment exercises are to help reduce the symptoms of language processing disorder, helping Bella build phonological awareness for decoding and reading comprehension.

There you have it all of it out in the open in terms of Bella's speech and language issues

. I hope this helps Bella's speech and language treatments at the school level as well because there are medical issues and then there are educational issues.

I am learning in Bella's treatment how this would effects Bella in the school setting one example is social cues so a language group or friendship group would be an excellent way to help Bella with this at school whether or not the school will do this is up to the school.

I will ask and see what can be done at the school level to help with the medical stuff we are dealing with. All of this is for me to accomplish with doctors

I only have 4 hours each night with my kid before she has to go to bed at 8 to get up and go to school the following day.

This language processing issue is not going to go away because you see she looks normal. People often assume and think oh Bella appears fine to let's ignore the struggles she has because she is not with the same severity as other kids with speech and language issues no Bella is unique with how 22q11.2 deletion effects her and she does need the help and support. No longer will I let Bella suffer in science

My hope in this post is that this helps teachers nurses and doctors understand from a parents perspective and from the perspective of someone who also has 22q11.2 deletion who went through speech therapy and didn't get all of the help I needed because I too appeared and looked like the typical normie child like Bella does. I am so thankful we are doing this and I am hoping this post does help Bella and others like Bella. 

Here is a video of what Bella sounds and looks like and how she feels about speech therapy

 

If you or your child are in speech therapy I would love to hear about your experiences in the comments blow.

until next time keep the faith and have fun with treatment programs.

 

September is Craniofacial Acceptance month

Craniofacial Acceptance

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My craniofacial difference is Velocardiofacial facial syndrome however you would never know because it is a mild slight difference than the average joe. I have a genetic disorder called 22q11.2 deletion syndrome and my very mild facial features make me look younger than my age. I am 34 years old if you look at my picture I have smaller facial features even the amount of teeth I have is more than the size of my mouth.

My daughter has the same velocardiofacial syndrome as she too has 22q11.2 deletion syndrome.

This is us and that is why I am posting about this because we appear like the typical normies but when you see us you think oh you are so blessed to look younger.

The challenge for me is being taken seriously by strangers and anyone else I meet. I also get carded everywhere I go even for rated R movies when I go out with my husband. Going out with my husband often gets questions like isn't he old enough to be your father or if he is my father and he is only 10 years older than I am. 

 

 

Organization: Children’s Craniofacial Association

Submitted by: Annie Reeves

2014 marks the tenth year Children’s Craniofacial Association CCA will observe September as Craniofacial Acceptance Month across the nation. Each year CCA families, friends, volunteers and related support groups band together to widen the circle of acceptance for individuals with facial differences. The goal is to create awareness of craniofacial differences and to get people to see that “beyond the face is a heart.”

As part of the 10th Annual Craniofacial Acceptance Month, CCA will hold its 7th Annual National Picnic Day on September 13th (or other date in September of your choice). CCA families across the nation will hold picnics giving them a chance to get together with other families in their areas, while promoting awareness in their communities.
If you would like to hold a picnic contact CCA Program Director Annie Reeves. CCA will invite all of the families in your area and help you organize your picnic.

In addition to raising awareness and acceptance, CCA is raising funds to support programs and services available to all individuals with facial differences and their families. Contact CCA Development Director, Jill Patterson for materials about this year’s fundraising efforts.

We hope you will join this important effort! Please call 800.535.3643.

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Pain Awareness Month-Bellas mild Cp story

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It’s September, which means Pain Awareness Month is in full swing. Pain awareness is something my Bella knows all too well. Bella has a mild form of spastic cerebral palsy. Yesterday we had multiple doctors appointments and one of those appointments was physical therapy.

 while you may want to get involved and help educate people about the issues facing the community of other pain sufferers it can be surprisingly difficult to find meaningful ways to help — especially ones that aren’t too expensive, time-consuming or require you to be an expert in policy and advocacy strategy which I am trained in but that is for a different post. 

Aside from telling friends or writing a Facebook status, what else can you do to support Pain Awareness Month? Every person with chronic pain deserves to have their voice heard so this is my way of getting our pain story out and for other to hear Bella's voice. 

I am speaking up for her on her behalf.  I ask that if you want to help others first start by sharing this post let Bella 10-year-old voice get heard. Then like and comment to help get this post ranked higher on the google spear. Lets let Bella know we all got her back.

I had her back yesterday I was there taking her to her doctor's visits and helping her deal with the challenge of missing her friends and teachers at school. I am there helping her catch up on her missed class assignments which we didn't get in her backpack. I am there pushing and being her biggest cheerleader. I am always there. Adam her father is there too but I took her to this appointment today just her and I. We had much needed one on one mommy daughter time and we even made the day kind of fun she had smoothies and I had coffee at Bigby. If you want to help you can send us your Bigby coupons for buy one get one our email is on the contact page. You can also donate gift cards to us for snacks and lunches for our appointments as people have asked how can we help others in pain.

Helping with the cost of gas to and from appointments and helping with food and snacks helps or even providing food and snacks helps. I had that idea while we were at Bigby knowing that hey this stuff is going to add up for 12 appointment visits. We are open to accepting gift cards just send us details and such in the contact page.

I'm even considering having a donate button that says buy me coffee on my page. I would look at it as a way to keep this website running that's another way to help spread awareness is by having your own website. The cost of this website is not much in fact it cost about 3 trips to BigBy and I keep paying for the website and running it because I want our pain to do some good in the world. 

The goals of physical therapy are to decrease Bellas leg pains from the spasms she often gets that keep her up at night.  Originally attending physical therapy to get a full assessment of her tightness of her legs and the strength of her arms we discovered that Bella foot is not flat but has a high arch and rotates so we are getting her ankle braces soon.

The doctors visits it does requires prior authorization on her insurance.  Bella has united community health plan Medicaid and children's special health insurance. This ordeal is going to make us see the pain specialist that diagnosed Bella with cerebral palsy which is in Ann Arbor. We are hoping we can get the doctor to just fax over an approved letter to the insurance. Decreasing pain is what we are working on in the first 8 weeks of treatment. 

The medically needed doctor's visits will require Bella to miss 12 days of school. Just for physical therapy. We also are doing speech and psychology which is another 8 weeks of treatment meaning 12 sessions meaning 12 days missed from school.

If you can do the math we are at 24 days missed of school if I have to drag these appointments out one after the next and space them out on different days which I am lucky that I can get all of these appointments set so they are back to back. 

Yesterday, for example, we had speech set at 10:00 am and then we had psychology at 2:00 pm and then we had physical therapy at 3:00 pm.  From 11:00 am until 2:00 pm we hung around the hospital which is where her appointments were at a rehabilitation hospital in Grand Rapids Michigan. A 45-minute drive from my home which means we had to use Medicaid transportation services to get us to and from. Our drop off time was 9:30 so we left our house at 8:30 am. We left the hospital to come back home at 4:30 pm.

I spent 20 dollars on lunch 10 for her and 10 for me. Thankfully the food at the hospital did not cost that much and they have daily specials.  The cost of these appointments are covered by the insurance but we had to play a word game to make sure they matched Bella's diagnosis one miss word and it would have been denied.  I am willing to play the word game with insurance in order to help decrease the leg pains for my daughter.

During the appointments in physical therapy, the physical therapist asked Bella what her pain levels get to when she is in pain. Level 10 sometimes I think it is even higher than that. She wakes up crying in pain often inconsolable and I have to watch her while I run a hot bath, get the heating pad and rub the knots out from her legs and feet.  

Other times her legs are just tired from all of the runnings she does. Bella takes backflen to help decrease some of the pain and to allow her mussels to relax and help her sleep she also is given ib profin.  The side effects of the Backflen is she sleeps so deeply she pees the bed we are working on waking her up at 12 to go pee and that seems to help with some of the bed wetting.

There are so many pieces to the pain puzzle which involved therapy and meds and exercises that those things keep us busy after school. I only have 4 hours with her at night I need to have some of this dealt with at the school however it not educational this is all medically needed. We do our best and she is not always in pain but when she is she makes us aware.

 I am writing this post for Pain Awareness Month to help Bella and others like her. I myself have pains of my own from having gasteroparies but I wanted to share about Bella in this post to help people see that Bella looks like the typical normie child but at night she in secret away from others view does struggle with pain. This post goes out to those of us who struggle with pain in secret let's reach out and share our stories to offer hope for others.

Thank you for reading. I want to know do you deal with pain? how do you deal with the pains you have or your child have? Write in the comments below and let me know your story of pain. Until next time friends I pray you are pain free.  If you want to donate and buy me a coffee or Bella some smoothies I email me at mommiesquietplace@outlook.com

click the link below to show your support for pain suffers on your Facebook profile

tps://twibbon.com/Support/pam17/

You can also help by following the pain assocation websites

American Chronic Pain Association

U.S. Pain Foundation

Chronic Pain Research Alliance

International Pain Foundation

  Another way to help is to shop for your cause. Wear a T-shirt, bracelet or pin that raises awareness of chronic pain and the condition you live with. Etsy features designers like Spoonspirations that make chronic illness-themed items. Many nonprofits also sell apparel, like the National Fibromyalgia Association, Reflex Sympathetic Dystrophy Syndrome Association, Global Genes, and National Fibromyalgia and Chronic Pain Association. The profits from these items go back to the cause, so it’s a win-win.

In order to help people understand the chronic pain patient’s perspective, we need to amplify the voices of the warriors who speak up.

For example by sharing Bellas story and my story online you are sharing a different prespective and view

Like, comment and share your friends post like you would a celebrity post.

 

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If Bella can you can too! 22q can do. One foot in front of the other

This is Bella finishing the 5k race back in May.

Hello every one

I am catching up on sharing all the fun videos we shared.

After Bella was born and she put one foot in front of the other there has been no stopping her from reaching her goals. Bella inspires me and shows me how to be myself and the best version of myself.

Bella was born to inspire others.

This girl pushed me to run a 5k race and I have health conditions where the doctors said do not run.

I ran and I made it. I trained, I puked, I even cried and wondered what was I thinking I'm too fluffy and round to do this. I did it. I ran the race with her miles a head of me but I finished. 

Bella says train hard and you can too. 

Empowerment,  breathing and focus is how we did it. 

one step at a time Bella and I work as a team towards our goals.

Did you remembe this is the same Bella who not only has 22q11.2 deletion syndrome but also a mild form of cerebral palsy and wears leg braces at night for mild spastic cerebral palsy? Invisible illness can and will do. 

If you like this video like, thumbs up, comment and subscribe.

To the teachers who are teaching my child with 22q11.2 deletion syndrome IEP and hopes

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My 10-year-old is mainstream with an IEP has ADHD issues and attends multi appointments within a week sometimes two a week and misses school. truancy issue could be a concern, especially in the winter months when my daughter has fevers which often go unexplained. I have our journey on my website as a blog post because I want to share with the teachers what it is like first hand from a moms perspective raising a child who also has it and the many challenges and joys we face.

I am sharing this info because chances are if you are reading this you are Bellas teacher and I sent you to this page to understand what it is that Bella goes through and how it looks to help keep her as healthy as she appears.

Here is a list of Therapies my child needs in order to appear as healthy and happy as she seems to be 

Ot is short for Occupational therapy is a health and rehabilitation profession. Occupational therapists work with people of all ages who need specialized assistance to lead independent, productive, and satisfying lives due to physical, developmental, social, or emotional problems. It is do to these appoitments she does so well.

Pt is short for This is because Bella has Cerebral palsy and she has leg braces that she wears at night so we have to help with some of the spasms she has that used to keep her up nightly Bella takes a pain med and sees pain management as well.

Physical therapy is used to treat a variety of diseases and conditions using physical means, like stretching or exercise. It can help reduce pain and allows a gradual return to activities after illness, injury or surgery.  This helps with the leg spams that used to keep her awake at night and she used to Miss school do to screaming and crying in pain at all hours of the night do to leg pains. Since we started doing this stuff she has been on pain meds as well and she has had almost no issues at night except for very few. As long as we keep her active she does well

Physical Therapy Goals

  • Balance and coordination

  • Joint and muscle pain

  • Strength and endurance

  • Walking

Then we also do Speech Therapy

In a recent parent-teacher conference, maybe the teacher expressed concern that your child could have a problem with certain speech or language skills. Or perhaps while talking to your child, you noticed an occasional word not understood as clearly as peers her age.

It's wise to intervene quickly. An evaluation by a certified speech-language pathologist can help find out if your child is having problems. Speech-language therapy is the treatment for most kids with speech and/or language disorders.

Speech Disorders, Language Disorders

A speech disorder refers to a problem with the actual production of sounds. A language disorder refers to a problem understanding or putting words together to communicate ideas.

Speech disorders include:

  • Articulation disorders: difficulties producing sounds in syllables or saying words incorrectly to the point that listeners can't understand what's being said.

  • repetitions ("b-b-boy"), or prolonging sounds and syllables (sssssnake).

  • Resonance or voice disorders: problems with the pitch, volume, or quality of the voice that distract listeners from what's being said. These types of disorders may also cause pain or discomfort for a child when speaking.

Language disorders can be either receptive or expressive:

  • Receptive disorders: difficulties understanding or processing language.

  • Expressive disorders: difficulty putting words together, limited vocabulary, or inability to use language in a socially appropriate way.

I am looking forward to updating everyone on how the treatment and process go we had Bella do a neuro evaluation and that post is also on my website this is the follow-up plan and treatment which we will be doing to help her.

Monitoring of her IEP and goals is important so we can stay on top of her progress reports between the teachers and doctors.  I look forward to working with you as a team this year in helping Bella achieve her school goals and her grades. I do all I can and I am willing to come into the school and volunteer my time when I can help out let me know. Thank you for your time in understanding and I look forward to a great year.. I have included a notebook to send communication back and forth so we can work on any issues that come up.

I also request social to be kept this year and a freidnship group started so Bella can work on social cue issues so can get help with mataining and making new friends to have a more successfull time during school there for will be able to focus on her school work if she is not focused on aniexity issues that come from dealing with peers in her age group.

I am wlling to volunteer my time and come in the class room just request a day or two notice before hand. I am willing to help out with actives and filed trips. Just let me know how I can also help you.

Looking forward to a fantastic school year.

Love Bellas mom Aka Amanda